tag:blogger.com,1999:blog-29077969844978664312024-03-14T09:13:25.955+00:00Come with M.E. on a journeyBeautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.comBlogger170125tag:blogger.com,1999:blog-2907796984497866431.post-55426237048484227702016-01-12T11:53:00.000+00:002016-01-12T11:53:56.234+00:00Parasympathetic Nervous system and ME CFS and CFIDS<div dir="ltr" style="text-align: left;" trbidi="on">
This morning I've been reading an interesting article about Vagus nerve Stimulation courtesy of Cort Johnsons excellent blog/website <a href="http://www.cortjohnson.org/blog/2016/01/11/vagus-nerve-stimulation-fibromyalgia-chronic-fatigue-syndrome-mecfs/" target="_blank">article here</a><br />
There has been some success in Fibromyalga pain reduction using Vagus Nerve Stimulation (VNS). The article goes on to talk about how VNS can help stimulate the parasympathetic nervous system which helps the "rest and digest" processes in our body. Electronic stimulators are very expensive, but there are several things that you can do to help the process manually which many of us are probably already trying as part of our recovery/treatment, these include yoga and meditation/deep breathing. One of the things mentioned in an article Cort links to is Om chanting and how it can help:<br />
<br />
‘OM’ Chanting
An interesting study was performed by the International Journal of Yoga in
2011, where ‘OM’ chanting was compared with pronunciation of ‘SSS’ as
well as a rest state to determine if chanting is more stimulatory to the vagus
nerve. The study found that the chanting actually was more effective than
either the ‘sss’ pronunciation or the rest state.
Effective ‘OM’ chanting is associated with the experience of a vibration
sensation around the ears and throughout the body. It is expected that such a
sensation is also transmitted through the auricular branch of the vagus nerve
and will produce limbic (HPA axis) deactivation.[iii]
How to chant?
Hold the vowel (o) part of the ‘OM’ for 5 seconds then continue into the
consonant (m) part for the next 10 seconds. Continue chanting for 10
minutes. Conclude with some deep breathing and end with gratitude.<br />
<br />
I'm going to give it a go.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com3tag:blogger.com,1999:blog-2907796984497866431.post-88570879076703998382016-01-10T16:41:00.002+00:002016-01-10T16:41:44.043+00:00ME CFIDS CFS sleep and recumbent cycling<div dir="ltr" style="text-align: left;" trbidi="on">
On the second of January I tried to start the building up of my calf muscles as mentioned in my previous post. The recumbent exercise bike that has been sat unused in the spare room for the past seven months was the method of choice for achieving this. I did 5 minutes on the bike with no resistance set. The first two minutes were really hard, but then it eased a little. I watched my heart rate monitor and the highest it got was 109 bpm and only for a short time, but when I got off the bike my legs were trembling and my body felt delicate and shaky. This meant of course that I was good for nothing for the rest of the day. Infact it took me five days to recover from my five minutes on the bike. Today I am going to do 15 seconds on the bike and build it up in 15 second blocks. Let's see how that goes.<br />
The other thing the incident on the bike did was upset my sleep pattern. Normal for me is waking for two toilet trips at about 1.30am and 4.30 am, after the cycling I found myself lying awake in bed for a couple of hours between two and four am. I am pleased to say that this seems to have corrected itself, and last night I slept for seven hours straight (9.30am to 4.30am) WooHoo!</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-14831672736724775912016-01-01T13:46:00.004+00:002016-01-01T13:46:46.248+00:00Tedium of 2015 and working on the Now<div dir="ltr" style="text-align: left;" trbidi="on">
I can't believe the previous post was back on the 22nd August. This has been the longest break in all my blogging and I'm not really sure why. I think that subconsciously I really want this blog to be a positive story of my recovery and actually since my trip to the Royal Neurological hospital back in May (<a href="http://cfsrecovery.blogspot.co.uk/2015/05/my-trip-to-royal-hospital-of-neurology.html" target="_blank">details here</a>), I've found it quite hard to be feeling positive. The last seven months have been a very very gradual working my way back to my pre hospital strength. I am not there yet. I now find it hard to do the easy yoga class at the MS therapy centre whereas, I was doing that plus about three quarters of a normal sports centre class in a week for example. I can do a baseline amount of activity which will get me through the day but any extra seems to have a detrimental effect right now. Driving what I would call middle distances, so maybe 40 miles plus has become very demanding of energy which is quite restrictive and I have been relying a lot on friends, and Ant of course, for this. The back end of last year has also seen me dealing with the removal of skin cancer from my right arm, all now removed and clear, and the emergence of some new painful gastro symptoms which fortunately now seem to have subsided. <br />
With everything else, my regular 3 times daily Perrin massages had fallen to the wayside. I was just massaging every now and then when I felt like it and gradually I began to notice the result of that when with my fatigue I began to get the horrible sickness and heavy feeling that i remember from the early stage of my ME. I have picked the massages up again and that feeling has gone. It confirms to me the very important part that Perrin has played for me and acted as a reminder that i must, certainly in my current condition, keep up with the regular massages.<br />
The most annoying of ongoing issues are palpitations which before my hospital visit I had pretty much got rid of. These now persist, not often as I am consciously not pushing my body physically in any way. Strangely it has happened 4 times when I have just been sat watching something like a classical concert or speech. I go very hot, then cold and clammy, my heart rate rises and I just feel unwell. Neither my body or mind feel stressed at any point immediately prior to this happening. I would like this to stop please!!!<br />
In November I did go back to the Royal Neurological hospital for my follow up appointment and after a very spiky start to my appointment, it did finish with a really useful session with a specialist POTs nurse who was VERY helpful.<br />
<br />
Anyway, all these things are in the past. I feel the need to have documented them for my own record, but now I must move on. I feel positive about the coming year. I have been reading Practising the Power of Now and find it very useful to remind me of all the things I can do right now. There are no problems, just situations which either have to be dealt with or accepted. I intend to do more of both - do what i can to deal with the ongoing situation and be more accepting of what is.<br />
<br />
Early goals for this year are to put on a little weight. I weigh 57 kilos and would like to be 60. I'd like that extra weight to be muscle : ) On the advice of the POTs nurse I am going to try and increase the size of my calf muscles (currently 34cms on left and 35.5cms on the right) Hopefully my thighs will benefit too (currently 47.5cms left and 48cms right). So that is what I am going to be focusing on, along with continuing my Perrin massage and cranial osteopathy, trying to get myself to a point where I'm managing the therapy centre yoga class well and continuing to focus on my diet and eating well. That should all keep me pretty busy. Most importantly I'm aiming to have lots of fun with family and friends.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-32303544891197979932015-08-22T19:20:00.000+01:002015-08-22T19:20:27.096+01:00ME CFS pacing<div dir="ltr" style="text-align: left;" trbidi="on">
Yesterday I went to collect DD2 from a week long summer music school which always finishes with the most fantastic of concerts. I guess I'd watched about 85% of it before I all of a sudden felt very warm and had to remove my cardigan, then I had a pain in my sola plexus and then horrible palpitations. I looked at Ant and I think he knew what that look meant, I had to leave. Luckily we were sat in the front row and when the piece they were playing finished I headed out to the corridor where I sat with water wondering where I could reasonably lie down or whether or not that would make me feel any better. I went cold and had the shakes with tremors and then gradually it all subsided. I could hear the finale of the concert, but it's not the same as being in the audience.<br />
<br />
It reminded me very much of a similar incidence back in June at a speech day when I was just sat watching an event and enjoying myself and almost exactly the same thing happenned. That day I put it down to the heat in the marquee that triggered the reactions. Ant says it was hot yesterday in the music hall, but I didn't feel it.<br />
<br />
Anyway, afterwards yesterday my head hurt and this morning I woke up weak and with a headache which hasn't moved all day. I was supposed to be out with Ant and Ben today, but I couldn't make it and they went for a boys day out together. I have spent the day in my pj's on the sofa. Yet another planned day out missed. Probably my own fault for over scheduling myself (again). I had had a reasonably busy week this week, but I seemed to manage pretty well as it was happening, yesterday, whilst I was sat relaxing and listening to music my body objected retrospectively.<br />
<br />
6 years down the line you think I would be better at knowing what I can and can't get away with, but I am still unrealistically optimistic about what is possible.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com2tag:blogger.com,1999:blog-2907796984497866431.post-18662121009880123452015-08-15T21:56:00.001+01:002015-08-15T21:56:49.029+01:006th anniversary<div dir="ltr" style="text-align: left;" trbidi="on">
Today is the 6th anniversary of me falling ill with ME. I'm feeling OK about it at the moment. It hasn't been the best 6 years, there has been so much in that time, that I have wanted to do and not been able to. Equally, just because of my nature I have probably done more in that 6 years than lots of healthy people would have done.<br />
It seemed fitting that I travelled to see my cranial osteopath today, he has helped me so much over the past 6 years. It only takes him 40 minutes to treat me now, it used to take an hour and a quarter. I feel so weird afterwards, light headed and vacant, but nearly always sleep better following a treatment. It has been a valuable part of my treatment.<br />
<br /></div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-48315209847179153862015-08-13T16:31:00.000+01:002015-08-13T16:31:35.552+01:00It's been a while...<div dir="ltr" style="text-align: left;" trbidi="on">
It's been two and a half months since I last posted. I'm not sure what has kept me away, maybe I just don't like writing about negative things and have avoided updating for that reason. Now I am annoyed with myself for not doing so, as it's so easy to forget how I've been and what has happened and I've lost the opportunity for "as it happens" recollections, now everything is retrospective.<br />
<br />
So, what has been going on in the last eleven weeks? Well, things have gradually been improving and I would say that my steps are now at a baseline of around 3000 - 3500 per day, that has come by means of a steady increase. I still cannot exert myself physically in any way and am finding even the therapy center yoga class hard going (although that too has improved slightly). I am walking around a bit more and haven't needed the wheelchair. Walking even very short distances was making it difficult for me to talk with effort, that has gone now which is comforting. Whereas when I first came out of hospital I was scared that I wasn't going to be able to build myself up again at all, I now feel a little more hopeful that I will get back to my pre-hospital levels of activity. I do now feel I've plateaued again though and am not sure whether there is any more I can do to assist other than rest.<br />
<br />
Rest is a difficult one as I am already so de-conditioned that resting (pacing) makes me feel like it's not helping, but I know it's what my body needs right now. I know that because, the minute i try and do "too much" I get palpitations and the fatigue just cuts in. So, it's a VERY fine line between resting / pacing and keeping up current levels of activity - a constant balancing act. It's always been that way (as it is for anyone with ME), but right now it just feels more delicate than ever.<br />
<br />
I asked my GP if I could access some more CBT to help me deal with the frustration of not being able to do anything and as always he kindly obliged. I've always thought that the usefulness of CBT is dependent on the therapist and your connection with them and sadly, unlike my previous experience, which I found very useful, this lady just didn't seem to get inside my head. She didn't seem to understand my thinking or give me any ways of dealing with the frustration. Of course I had to fill out the mandatory "are you depressed" questionnaire. "Well, you're not depressed" she said, ...yes I know that!!! I already knew that before I ticked all your boxes!!! I've come to you for help with the frustration of not being able to do all the things i want to do, not because i am depressed. So, her advice was that she thought I had not accepted my situation and that I would find things easier once i did. I don't even know what to say about that.<br />
<br />
Nine weeks ago we had a long weekend in Centre Parcs where I spent a lot of time sat at the side of the pool watching the others. We used the wheelchair a lot which I didn't like. It did at least mean I could do things I wouldn't have been able to without it and join in a bit more which made it more bearable. It was a relaxing break.<br />
<br />
I've also had a Perrin technique appointment and stepped up my massages to see if that will help, so now back to having the full massage every day lying down rather than just every other day standing up.<br />
<br />
A few weeks ago I was diagnosed with skin cancer, <a href="http://www.nhs.uk/Conditions/Cancer-of-the-skin/Pages/Introduction.aspx" target="_blank">Basal Skin Carcinoma</a> A GP treated it twice with cryotherapy but then sent me to a specialist who organised a biopsy. He was hopeful it could be treated with photodynamic therapy, but after the biopsy they have decided that it would be best treated with surgery.<br />
<br />
Recovery has been slow, I feel I have missed the summer really, but I am trying to make the most of the energy I have and be grateful for what I can do. Still my mind buzzes with ideas and more things it wants me to do. In my head acceptance means trying in some way to curtail those urges to act and as frustrating as not being able to do those things can be, I'm not sure I want to "accept" and curb the desire.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com1tag:blogger.com,1999:blog-2907796984497866431.post-41787371676615361912015-05-26T12:15:00.000+01:002015-05-26T12:15:12.730+01:00Not quite ready for rhubarb chopping yet<div dir="ltr" style="text-align: left;" trbidi="on">
If only I took my own advice. Yesterday having felt my system calmed by the Cranial osteopathy on Saturday, I spent the day downstairs in the garden, kitchen and lounge. At about 4pm I was stood chopping some rhubarb in the kitchen and had horrible palpitations. It left me shaky and internally agitated for the rest of the afternoon and evening which I spent on the sofa.<br />
I interpreted this as my body saying you've tried to do too much and today I am back on my backside on the sofa trying to occupy myself in some kind of interesting / useful / therapeutic kind of way!<br />
To put my activity into some sort of context, prior to my trip to the neurological hospital I was averaging between 5000 and 7000 steps a day (5000 was a good safe baseline for me). This week, my weekly total was 7000 steps, so averaging 1000 steps a day. This surprised me actually as I know some days I've only managed 4-500 steps and didn't think I'd done much over 1000 on any day.<br />
The Fitbit is so useful for this kind of tracking. I probably need to be limiting myself to 6-700 steps a day right now.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com3tag:blogger.com,1999:blog-2907796984497866431.post-1683247219575216942015-05-24T13:24:00.000+01:002015-05-24T13:24:22.940+01:00Cranial osteopathy really helps (again!)<div dir="ltr" style="text-align: left;" trbidi="on">
A week and two days after my trip to the neurological hospital I am starting to feel a bit more human again : ) I managed to shower and wash my hair myself yesterday and have been getting dressed too. On Thursday night I had horrible palpitations whilst in bed, but it didn't develop into tremors and I haven't had any as bad as that since.<br />
Yesterday Ant drove me down to see my Cranial osteopath and even as I was lying there being treated I could feel my system relaxing. His conclusion? All is not lost. My whole system has been pushed past it's limits. The right lung and right side of my heart have been stressed and all the organs lower than my diaphragm are stressed, but underneath it all there is calm. I am not back to where I was 5 and a half years ago, I am stronger than that. I sort of know that too because although my body is weak and doesn't feel good and isn't responding well to anything physical, it doesn't feel as fragile as it did back then (it did when I left the hospital 2 weeks ago), but it doesn't now. Another good thing is that I am a lot more switched on in terms of how to deal with such a relapse now than when I was first ill when I was inclined to just push on through things. <br />
Yet again I don't understand what the cranial osteopathy is doing to me, but, I certainly felt better after the treatment. Then, as always about an hour or so following the treatment I felt incredibly spaced out and spent the rest of the afternoon just lying in bed and letting my body do what he had set it to do.<br />
This morning I feel better than I have and am going to do my resting downstairs on the sofa today rather than tucked away in the bedroom. Upstairs is good because if I am in bed it stops me from doing things, but downstairs where the action is it's too tempting to get up and try and do things. So I must remind myself to just rest and keep eating well.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-52849724571297446982015-05-19T12:34:00.000+01:002015-05-19T12:34:20.047+01:00Update<div dir="ltr" style="text-align: left;" trbidi="on">
Six days on from my last post. I find myself still floored by the events of the last 10 days. There is so much I both need and want to get down in this blog, but right now I just don't have the energy to do it so, I'll just try and get the events down at this point.<br />
I spent from last Friday tea time until Wednesday lunchtime in bed. When I got up to go to the bathroom I felt nauseous and lightheaded in a strange sort of off balance type of way. Very difficult to describe and very very weak. By Wednesday lunchtime I felt a little stronger and ventured down to the sofa for some of the afternoon. I did the same on Thursday.<br />
On Friday, a week after my return from the hospital in London. I was still feeling bad and thought the best plan would be to go and see my GP. My thinking was that it would be harder to see a doctor if I was feeling worse over the weekend, so should go now. In the doctors surgery my heart rate was high and he wanted me to go straight to the hospital, In fact he wanted to call me an ambulance. I told him that wouldn't be necessary as I had a friend outside and she kindly took me straight there.<br />
In Accident and Emergency Ant turned up and bloods and an X-Ray were taken and blood pressure and heart rate monitored. We were hoping they would let me home, but instead I was taken up to one of the wards for further monitoring. They decided they wanted a cardiologist to see me the following morning, so I stayed attached to the monitor overnight.<br />
Four and a half hours sleep later I am not feeling replenished or rejuvenated and lie listening to podcasts and meditating to try and get my heart rate down as I wait for the doctor to do their rounds. <br />
Fortunately, the doctor I saw had a few friends who had ME and she was very understanding of how sensitive the condition could be. It was good that she had a junior doctor with her whom she was filling in with things that might need to be taken into consideration if someone had ME, so that was good to see. She said she would email my heart consultant and ask him to chase the results from the Neurological hospital and that I Should phone them too. She upped my medication and said I could go home (at which point my heart rate dropped with relief!)<br />
The doctor that discharged me asked who my ME specialist is. I told her I didn't<br />
have one and asked whether there was one at the hospital? The answer was no, but she said, that was not a reason for not having one and I was to contact my GP and he should find me one. So, when energy returns, I will find myself an ME specialist and I'm pretty sure my GP will refer me. I haven't seen an ME specialist since 2011 so it's probably worth a go. Sadly, that specialist, who I found very helpful retired not long after I saw her.<br />
So, since being discharged on Saturday I have done very little. Staying in bed, heading downstairs for lunch and again later in the afternoon when the family are all around. The increased medication has definitely taken my heart rate down, just getting the occasional palpitations now (always preceded by clammy sweating feet!). I am trying to stay positive and not let this setback get me down. I am watching inspirational videos and listening to lots of inspiring and entertaining podcasts<br />
and radio. There is a calm acceptance on my part that it is going to take time to recover, there is no point being frustrated as that is not going to help move me forward.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-50525554748981710062015-05-12T16:08:00.000+01:002015-05-12T16:08:33.002+01:00My trip to the Royal hospital of neurology and Neurosurgery for POTs testing<div dir="ltr" style="text-align: left;" trbidi="on">
On Thursday morning early I made my way by train to the national hospital for neurology and Neurosurgery in London for two days of testing. There had been much debate about whether my hubby (Ant) would come with me as I originally thought it would be nice, but later thought that I was being a bit wimpy about it especially as he would have to take two days off work. There were also practical things at home to be taken into consideration. We finally decided that he would stay at home on Thursday and come down on Friday morning to bring me home on the train.<br />
<br />
The purpose of the trip was to have some testing done in the autonomic department to get some more specific information about my POTsyndrome and how it might be treated.<br />
<br />
On Thursday morning after arrival I was fitted with a 24 hour blood pressure and heart rate monitor. The monitor recorded my data every 20 minutes throughout the day. In addition I was given a list of physical activities they wanted me to carry out at different times throughout the day, for these, I set the machine off manually to record the data . I could also manually start the machine if at any time during the day I got any "symptoms". I didn't write very much in the symptoms column of the diary sheet I was given and on reflection I think this is because after nearly 6 years of this condition lots of "symptoms" just seem normal to me.<br />
Looking at the list of activities in the morning it didn't seem too difficult a challenge, although there was a fair bit of time management involved. I had to do things like walk up a flight of stairs, walk briskly for three minutes, lye, sit and stand for different time periods. The 20 minute readings finally stopped at 10.42pm, well after my normal bed time, at which point they then changed to hourly until the morning. At 9.30pm a manual reading after standing for a minute and then climbing a flight of stairs had to be taken. Once this had been done, the accumulative affect of the days simple activities had caught up with me and I had a few tears on my bed and regretted that Ant wasn't there with me.<br />
After not too bad a night considering the machine was going off every hour I woke at 5am so hadn't had as much sleep as normal.<br />
<br />
I was back at the autonomic department for a 9am appointment where I was taken into one of the testing rooms and the machine was removed and my diary handed in. I had been told by the very kind bio scientist that the mornings testing would take around two hours.<br />
Laying flat on the tilt table, another blood pressure cuff was attached along with some other monitors and a cannula and I then had to perform some tests. The first was squeezing a pressure pad. With my left arm I had to squeeze the pad to a certain amount of pressure on a dial in front of me and then hold it there for three minutes, physically quite demanding, but my competitive nature wouldn't let it beat me. The second test was just deep breathing, that was fine. Next I had to count back from 490 in sevens. Quite pleased with how I did on that one : ). The third sounded simple too, I had to take a deep breath and then breathe out long and hard into a tube for 15 seconds. When I started breathing out though I realised that the tube I was breathing into was in some way pressurized and I was having to blow against that. It sounds so simple, but I felt so ill, I thought I was going to pass out (I was lying down to do all these tests). I can't properly explain how it made me feel, I don't think I have experienced anything like it before. I felt so bad and after this my legs started to tremble in the way they used to when I was first ill and I used to get night time shakes. We stopped the tests as I knew that if I just let it happen these trembles would travel up my body in waves and then eventually suddenly stop. This trembling, which normally happens at night, does usually leave me completely physically exhausted however. This time it was like the trembles were stuck in my thighs, they didn't travel up through my body, so to me they felt stuck. There were more tests to be done, one which involved clamping my hand and lower arm in a large ice pack and another, a panting exercise to induce hyperventilation. I knew at this point that I was completely out of control of my body and that I wasn't in a good state to carry on with these tests, particularly as I hadn't even done the tilt table test yet. Then turmoil set in as I was there in the lab and wanted to do the tests to provide the results, but my body was telling me not to do it. These days, I spend a lot of time telling myself to listen to what my body's telling me before embarking on any activity, but there and then I was desperate for them to get any info they could. Looking back now. I wasn't really in any fit state to make a decision about anything. <br />
<br />
I rested for a while and then we decided to go straight on with the <a href="http://www.potsuk.org/diagnosis" target="_blank">tilt table test</a>. Having had this test once before I knew that being tilted to the 60 degree position did not feel good but last time once in position it felt like things settled and it was okay. This time it felt horrible and then got worse. My body is getting uncomfortable just thinking about it now. It was like such a heavy pressure on my head and on my chest. I tried everything to help myself , I tried meditating with a mantra and through breath and through imagining I could hear one of my favorite guided meditations. I tried visualizing myself enjoying a Roller coaster ride, and then being in my yoga class and in other safe feeling calm places, but my body wouldn't settle.<br />
It was obvious after 5 minutes that things weren't going well and I was asked if I could just last another 5 minutes so that they could take another blood sample at 10 minutes and then I was brought down. My heart rate had gone over 150 beats per minute and I was struggling. I was upset and in tears, the tilt table test was supposed to last 45 minutes and I had only managed 10 and I hadn't managed the two earlier tests either. I felt like I had failed to provide them with as much data as I could have. Typing this now, I know I couldn't have done any more and my hope is that the fact I couldn't complete the test is in itself useful data. The scientist was very kind in trying to reassure me that they had enough information from the data they had.<br />
<br />
I felt so rough, I don't really know how I managed to get with Ant back to the railway station. I was struggling to breathe and talk, my walk was a very slow shuffle and it was at least an hour before I could even tell Ant what had happened. I went straight to bed when we got home and I've been there for 3 and a half days. Today I have made it down stairs for a while. When I stand I feel woosey, off balance and nauseous. Most of all I am fatigued, and this is the bit people sometimes just don't get, they think I must be feeling tired and want to sleep. I'M NOT TIRED. I DO NOT WANT TO SLEEP. My body is fatigued there is no energy for anything other than the essential. Typing this is using all the energy I have. My hands are resting in front of the keyboard and my fingers are moving as little as possible, just applying a downward pressure to the keys is an effort for me right now. The middle finger on my right hand is trembling as I do it. I want to finish this blog entry though, because today is International ME awareness day and it's good to raise awareness and for people to know how ME effects someone they know.<br />
I have no idea how long it's going to take me to recover back to my "normal". Hopefully not too long. As Ant so wisely and calmly says "It will take as long as it needs to take" and frustrating though it is, this is what we have learnt. Having ME is like riding a roller coaster of energy. We are not in control of how fast it travels, how long it hangs at the top or how deep the next plummet might be. Sometimes, because we don't want to miss out on the fun, we choose to jump out of the car and push it higher or faster than it wants to go and we do that knowing that we will pay for it with a more severe fall on the other side. <br />
On the one hand, I think I was naive about how much the autonomic testing might take out of me, but on the other, I went into it optimistically and positively, believing the benefits of putting myself through it and the data it will give the doctors will make it all worthwhile. I just really hope that turns out to be the case.<br />
<br /></div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-6296560108505723152015-03-26T10:18:00.000+00:002015-03-26T10:18:18.702+00:00POTs Treatment (Postural Orthostatic Tachycardia Syndrome)<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif;">On Tuesday I took a trip to London to attend an appointment at the <a href="https://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN/Pages/Home.aspx" target="_blank">National Hospital for Neurology and Neurosurgery</a> . I had been referred by my heart consultant and I was really happy to have this referral as I knew that my heart consultant had got to the point that there was no more he could do for me. I had naively thought that a hospital of neurology would also be able to help with M.E. as well as the POT syndrome (which I just consider a symptom of my M.E. really). However the consultant I saw was purely focused on the POTs and made it clear that she was not an ME specialist. It seems strange to me that when 80% of people who have ME also have POTs, that a POTs doctor wouldn't have a greater knowledge of ME. They must see lots of people with ME. There is also the issue that when you have ME a multi faceted condition, surely it is difficult to just isolate one issue and deal with it without taking the other situation into consideration. One of the non drug treatments for POTs for example is exercise, well there's a reason I need someone who has an understanding of managing exercise with M.E. I mentioned for example that I was very interested in the work of Dr Nancy Klimas in the US, who is using a "below anaerobic threshold" exercise programme with her ME patients, but was told that they couldn't help me with that.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">So, lets set all that aside and just say that I was hoping for a slightly more all around approach to my current condition. What I in fact got was a very detailed and specialist approach to the POTs which regardless of the above paragraph, I am very grateful for. I had known for example that I needed to increase my fluid intake, but couldn't find out any specifics on by how much and I knew I had to increase my salt intake, but couldn't find out by how much, so all this verbal information was very useful.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">I had a very thorough physical examination where I was checked for hyper mobility in my joints. It appears only my elbows are hyper mobile and I scored a low 2 out of 9 in that test, which is good and all my reflex reactions were tested and were all normal. So, physically I did well and the doctor said that was good and a little unusual. My heart rate was 107 sitting and only rose to 112 on standing - this is where the Ivabradine drug has really helped me. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">The doctor took a detailed history and asked me if I wanted to attend a support group which i declined at this stage thinking it not practical with the travelling involved, but I might take them up on that at a later date.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">They are going to give my autonomic system a good check over, with two days of testing including another tilt table test, 24 hour blood pressure and heart rate and blood tests. </span><span style="font-family: Arial, Helvetica, sans-serif;">There are different types and causes of POTs and w</span><span style="font-family: Arial, Helvetica, sans-serif;">hen they have all this information they will be able to then offer a more accurate treatment programme. I was given the choice of travelling up to the hospital on two consecutive days or staying over.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">So, I came away a little disappointed that I wasn't going to get any specialist ME help, but happy that if they can treat the POTs and ease the symptoms, that should make everything in general easier.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">Whilst I wait for my appointment to come through I need to increase my fluid intake to 2 to 2.5 litres, take salt with every meal up to a full teaspoon a day and try and continue with any exercise I can do, but specifically, recumbent cycling and swimming - both very good for POTs and my yoga practice. The idea with exercise is that you build good strong muscles in the legs which then squeeze and support the blood vessels in the legs to help pump the blood back up.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Energy wise, it's not been a great couple of weeks, I still haven't been able to do the normal yoga class but am enjoying my yoga at the therapy centre. It has also been a time of emotional stress, both good and bad, which always has an impact physically. I need to focus more on pacing and continue with tightening my other protocols until my reserves are a little stronger and then keep going with more of the same!</span></div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com1tag:blogger.com,1999:blog-2907796984497866431.post-2147948792477938432015-03-11T19:46:00.001+00:002015-03-11T19:46:43.698+00:00Fustrating ME relapse<div dir="ltr" style="text-align: left;" trbidi="on">
I really dislike writing when I'm having not such a good time, but this phase has been going on too long now and I need to get it down on record.<br />
I haven't really recovered from our New Year trip to Copenhagen. I knew at the time that I was pushing myself, but I hadn't quite realised how much. I have no reserves of energy to draw on right now. Even my normal baseline activity is more than I can manage comfortably at the moment. On Friday I went to my yoga class and that has wiped me out again. Today I went to my really gentle yoga class and tonight I am feeling muscle fatigued and just have that internal agitation in my system that I can't put my finger on. I need to go and see my cranial osteopath, he helps when my body feels like that. After having a period of really, really good sleep a couple of weeks ago, I'm now waking 4 or 5 times a night, it's so annoying.<br />
I have refocused on my Perrin technique massages and again on my diet. I feel a bit useless right now, everything is such an effort.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com3tag:blogger.com,1999:blog-2907796984497866431.post-15399093688634812792015-02-06T19:28:00.003+00:002015-02-06T19:28:47.113+00:00POTs at University College Hospital<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Arial, Helvetica, sans-serif;">It has taken the whole of January to recover from my trip to Copenhagen.
This week I have finally felt strong enough to get back to the "normal" yoga
class I was doing, which I have really missed. This week I did the <a href="https://www.youtube.com/watch?v=EXzUZc6auNw" target="_blank">flipping the dog</a> move for
the first time too, which made me feel great, like I am moving forward with my yoga practice. I've also done my class at the therapy centre and 5 minutes on the recumbent bike
this week. So, all very encouraging and I am focusing on this rather than the
fact it has taken me a month to get back to this point.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br />Yesterday I went to
see my heart specialist, a lovely chap who seems genuinely interested in the
enigma that is the heart and ME/CFS. He is happy with the way that the
Ivabradine is helping my POTs symptoms and wanted to know if I would be
interested in going to a specialist POTs clinic </span><span style="font-family: Arial, Helvetica, sans-serif;">at </span><a href="http://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN/Documents/National%20Hospital%20for%20Neurology%20and%20Neurosurgery%20interactive%20guide%20brochure.pdf" target="_blank">the National Hospital for Neurology and Neurosurgery</a><span style="font-family: Arial, Helvetica, sans-serif;"> in London.</span><span style="font-family: Arial, Helvetica, sans-serif;"> Off course I
bit his hand off at the opportunity. I'm guessing it will be the Autonomics department. So, he has signed me off from his care,
saying that I can come back to him if I need to and referred me to the
specialist centre in London. I didn't really thank him properly, so I think I
will drop him a line. It can be hard to find consultants who want to take the
time to look into ME if they haven't had much experience of it in the past, or to
look into your symptoms with ME in the equation rather than just as stand alone
symptoms. He has been prepared to read everything that I have shown him that
I think might have been relevant, and agreed to testing that I suggested such as
the tilt table and I feel we have worked together to try and improve this part
of the jigsaw puzzle, for which I am very grateful. I saw two heart consultants
before settling on him and I also had a change in gastro consultant because the
first one had suggested it was all in my mind and down to anxiety. So, I would
encourage anyone reading this who isn't happy with how their ME is being dealt
with not to be intimidated by a white coat and to ask to see another doctor.
There are specialists out there and there are also those who are happy to learn
along with you, just as my chap did. I hope his experience with me will now educate any future interactions he has with people that are sent to him with a racing heart
who also tell him they have ME.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">So, things are pretty good right now. I can
also now go back to tightening up my diet again - there has been far too much
birthday cake in my house over the past two weeks! - and look at trying to
increase my cycling a little maybe, gently of course.</span></div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-61547417380801474252015-01-25T08:06:00.000+00:002015-01-25T08:06:17.155+00:00Paying the price with my ME/CFS<div dir="ltr" style="text-align: left;" trbidi="on">
My previous blog post was on the 2nd January and reading it back now, I was on such a high from the activity I had managed over New Year. I was also aware at the time that I would probably have to pay the price at some point. In fact I was on such a high and probably had so much adrenaline going through me when I came back from Copenhagen that the following morning I decided I could go and do a normal yoga class. It was after that yoga class that my body decided it had had quite enough thank you very much and I fell or dropped (as that is how it feels) into a state of constant fatigue. During this time, everything becomes such an effort and there are no reserves. No reserves of energy to pull on and when you ask something of your body it just cannot respond. It took until the 19th January before I started to feel anything like back to my "normal" and since then I have been VERY careful. It's a delicate balance now and a case of rebuilding some sort of reserve by taking care of myself and making sure all my "recovery protocols" are in place. January is always a busy month in our house with three birthdays in the space of two weeks and this month we have also been choosing a school for dear daughter 2 to do her A levels. Fortunately, that decision has been made this weekend and that is one less thing for me to have to think about now.<br />
<br />
One of the frustrations of having such little energy this month is that the lovely little exercise program that I had been doing and so enjoying, before Christmas - 2 yoga classes and one session on the exercise bike every week - has had to be put aside. I worry about how long it will take me now to get back to being strong enough to be able to do this again. How much has that wonderful New Year weekend away set me back?<br />
<br />
All the more frustrating as my excellent Christmas present was a Kettler recumbent R exercise bike:<br />
<img src="http://www.kettler.co.uk/cms/wp-content/uploads/07986_896_Axos_Cycle_R_02-3.jpg" /><br />
It looks like a bit of a beast and it is! I love it and can't wait to get on it regularly. Being recumbent keeps my heart rate down and I get almost instantaneous relief from painful quad muscles by "flushing through" my thigh muscles as I cycle.<br />
It is electronic and I can program it in lots of different ways including by heart rate which will be useful.<br />
<img height="200" src="http://cdn.sweatband.com/kettler_axos_r_recumbent_bike_kettler_axos_r_recumbent_bike_console_2000x2000.jpg" width="200" />Right now I will just use no resistance and program for a certain amount of time. It has a great ear clip heart rate monitor built in which works really well. Young Ben is having lots of fun with it and building his thigh muscles and stamina too! I'm hopeful that this week I might be able to get back to it, but need to be cautious, I have to be patient as I know so well that exercise at the wrong time will just set me back further. It is an annoying wait when you just want to get on and DO.<br />
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Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-91543119011725960712015-01-02T07:24:00.003+00:002015-01-02T07:24:34.337+00:00A Step up in Steps - the Fitbit keeps track<div dir="ltr" style="text-align: left;" trbidi="on">
What a stupendous end to 2014. A city break away in Copenhagen saw my past four days step count look like this:<br />
11,088<br />
13,818<br />
<b>21,183</b><br />
9,389<br />
Yes, on New Years Eve I walked 21,000 steps! Even more impressive because of the 2 high step count days that preceded it. Those first two days felt really good, my body coped well. The 21,000 step day (which is 9 miles by the way) started well but became very challenging. My legs were s<b><i>oooo</i></b> tired I was determined to push on as we were away on a holiday and wanted to squeeze as much as possible into our short break. The thing that seems to work for me is taking lots of rests - some walking - sit down - more walking - sit down and so on, it definitely means I can go on for longer if I take this approach.<br />
Did I feel good by the end of it? No, of course not. At the end of each day, I arrived at the hotel room, got into the bed and stayed there (6.30pm on the first day) BUT, so far I haven't had what I would call a relapse, so, I didn't get that horrible feeling where my pulse is racing out of control and my body feels like it is on the very edge and my nervous system feels so frail. No, it didn't feel like that, I just felt weak and like I couldn't take another step a bit like how a marathon runner looks after crossing the line and needs to be supported. I was supported, there were times when my family swooshed me up, one at each arm pulling me forward so all I had to do was literally lift my foot and there was a forward motion, or walking up steps with my hubby pushing from behind, it all helps! I was touched by the children checking on how I was doing. I don't want them to think I am any less able than them - that I find hard - but, it was nice to see them being so thoughtful, even little Ben at one point put his arm around me as I walked along to ask how I was doing. <br />
The hardest point was probably yesterday at the airport with long walks to gates and lots of standing in line. I know I have said this before, but it still surprises me that standing in line is harder for me than moving. I understand now that this is probably due to pooling blood and do my best to keep moving by rotating ankles etc, but this too is hard of course if you are fatigued.<br />
I realise of course that with the delayed fatigue that is so typical with M.E. I am not out of the woods yet, however, now I am at home I am more in control and can relax and do only what I need to do. I can't help but think that all the yoga and recumbent cycling I have been doing for the past few months has really helped me unknowingly prepare for the past few days. I hope I can continue with it and push my recovery on still further this year.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-I4TkTHXYY7Q/VKZHPem-IlI/AAAAAAAAAEY/FXLNvmK2n1I/s1600/Sian's%2BCopenhagen%2B2014%2B071.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://2.bp.blogspot.com/-I4TkTHXYY7Q/VKZHPem-IlI/AAAAAAAAAEY/FXLNvmK2n1I/s1600/Sian's%2BCopenhagen%2B2014%2B071.jpg" height="240" width="320" /></a></div>
Tivoli Gardens early on New Years Eve.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-12532719361605767402014-12-06T06:47:00.000+00:002014-12-06T06:47:57.161+00:00Graded Exercise therapy and ME / CFS<div dir="ltr" style="text-align: left;" trbidi="on">
Yesterday I went to see my Perrin therapist. She was pleased to see that I was doing well, it had been 6 weeks since my last visit and that has been a pretty good time in general. She believes that the recumbent cycling I have been doing with no resistance has been flushing through my thighs and getting the lymphatics moving. It was also nice to hear her say that my thoracic spine area felt spongey, which means it has some movement in it, whereas in the past it has been rigid with no flexibility, this has to be down to the two yoga classes I'm managing a week.<br />
So, my therapist pointed out that what I'm effectively doing is Graded Exercise Therapy (GET) and I guess it is, but here's the nub...if I had been asked to attempt what I'm doing now 4, 3 or even 2 years ago, it would have thrown my body into a spin. At this point, I am the strongest I have been in my recovery, I know pretty much what my body can and can't handle activity wise. I know what sets off my nervous system and I know when I need to use coping strategies to try and calm it. Don't get me wrong, I am in no way in control of my body, but I am much more able to manage it. Attempting to do this sort of exercise when you're not first this strong would be absolutely the wrong thing to do and I think that's the problem with GET being one of the main treatments suggested by the NICE Guidelines for ME/CFS. Attempting GET before the body is ready is going to make things worse. However, if you also have Postural Orthostatic Tachycardia Syndrome (POTs), which many ME sufferrers do (often unknowingly),once the body is strong enough to tolerate some form of light exercise it can be helpful. Dr Peter Rowe MD of John Hopkins Medical Centre has been doing lots of research in this area. <a href="http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/orthostatic-intolerance-and-cfs-resources" target="_blank">http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing/orthostatic-intolerance-and-cfs-resources</a><br />
So, the usual has happenned, as I have been feeling gradually stronger, I have been relaxing my regime - wrong thing to do! - and as Christmas approaches the main thing I've released on is my intake of refined sugar. Yesterday was a bad day for this. I'm not going to beat myself up over it, but, today I am going to pull the reins in again on this particular facet of my regime because I do feel it has played an important part in helping me with my recovery recently. My next Christmas "event" is not for another 6 days, so I'm going to be pretty careful with sugar until then. The positive thing is that since I've reduced my sugar intake my tastes have changed substatially and I now really don't want anything too sweet. I'm going in search of a no sugar gluten free mince pie recipe as they are normally a staple in our house at this time of year, but right now the thought of biting into one doesn't appeal at all. If you have any sugar free Christmas recipies please share.<br />
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Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-76155737279783546402014-11-21T07:42:00.000+00:002014-11-21T07:42:47.344+00:00Update on Ivabradine for POTs (Postural Orthostatic Tachycardia Syndrome)<div dir="ltr" style="text-align: left;" trbidi="on">
I've just read back through my first entry after taking Ivabradine and thought it might be worth a very short update on how I'm feeling about the Ivabradine now. Back then when I was first taking it, I comment on the horrible feeling of malaise and heaviness that I got straight after taking it. I am happy to report that this is no longer the case. I fact next time I see my cardiologist, I am going to have to admit to him that the drug he nagged me to try for a year before I did is actually helping! It is definitely bringing down my resting heart rate and controlling it at the higher end which is allowing me to be more active I think. It's making a difference to the standing/sitting/bending down scenarios, so not an instant 20 or 30 heart beat rise on standing from sitting for example. In my yoga class I am able (to some extent) to participate in sun salutation type moves that require lots of bobbing up and down. This is something I could not have done before the Ivabradine. However, just as with the pancreatic enzymes I used to take, as soon as I have any sort of relapse I seem to loose the effects of the drugs and my body just does it's own thing.<br />
Two more things to note this morning. After going 7 months without a period, I've now had two within 30 days of each other??!!!! This has tied in with an extraordinary period of good sleep this week. I have had three or four days in a row where I slept for 6 hours straight without waking, this is <b>most</b> unusual, my normal pattern was to wake at about 1.30 and 4.30am. I'm dreaming lots too.<br />
I haven't made it to physio at the therapy centre this week and I now really notice how the hardness in my thigh muscles gathers gradually if I don't do the cycling exercises. I need to make sure I prioritise this to fit it in every week. I have been letting it go for other things that need doing, but I am now convinced it is helping and definitely makes a difference. I need to try and fit it in, but it's that old story of balancing out what can and should be done with the energy and time available.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-17789181036567094202014-11-15T12:58:00.000+00:002014-11-15T12:58:40.224+00:00Solve CFS Biobank<div dir="ltr" style="text-align: left;" trbidi="on">
Not such a good day today. Spending the morning in bed in a hope to regain a little energy and strength in my legs. Hopeful as ever I'm still thinking about the things I might do this afternoon, but realistically I'm writing today off so that I might be able to see my daughter play in a concert at the local theatre this evening.<br />
<div>
Today is annual log delivery day and I'm sad that I won't be able to help out with that - it's a bit of an annual marker for me as to how I'm doing, if it had been last weekend or the weekend before especially, I would have been fine. Fortunately, DS1 is getting older now and more able to help with moving and stacking the logs, but it's one of those jobs that's so much easier and more fun to do if we can do it as a family.</div>
<div>
I had an email today from the Solve CFS Biobank which I am participating in. If you have ME I would encourage you to sign up to this Biobank which will provide samples for future ME research. If you don't have ME I would also encourage you to sign up as they need healthy controls to compare our blood with. The website is here: http://solvecfs.org/solvecfs-biobank/<br />
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Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-73223583202854358782014-11-07T20:51:00.001+00:002014-11-15T10:00:05.615+00:00Working out with ME<div dir="ltr" style="text-align: left;" trbidi="on">
I said in my previous post that this post would be about what I have been doing with my extra energy. Well the first thing is that I've been enjoying it and not taking it for granted. I've been very conscious and thankful for the added boost that I've been enjoying.<br />
This energy boost has enabled me to put a few things into my week that I haven't been able to do previously. The first thing I added was an extra yoga class, not only an extra class, but a normal class at a normal run of the mill sports centre. Up until this point all my yoga had been at the local MS therapy centre. A gentle class consisting only of poses done lying, sitting or kneeling. Joining in with a normal yoga class has been very enjoyable. I still can't manage the whole class, I modify quite a lot and I dip out of some all together, but generally speaking, I think I do pretty well. I still do my MS class too, so that's two yoga classes a week. <br />
I also now go into the MS therapy centre's gym with the physio there once a week and spend some time on the exercise bike. I cycle for 10 minutes going forward and for 5 minutes going backwards. I keep under 60 revs per minute and I wear my heart rate monitor to make sure I'm not pushing my heart rate up and triggering symptoms - it normally sits at around 85bpm whilst I'm on the bike. The cycling has been fantastic as it has somehow managed to help with the issue I was having in my thigh muscles where they were tensing up and being sore and solid. The cycling motion is having a relieving effect on them which is wonderful.<br />
I'm taking a great deal of pleasure being back in sports gear again 👟 even if it is only gentle compared to what I previously did, it still feels great and I'm enjoying it.<br />
Sadly this week I have had a little slide backwards, hardly surprising with all the things we've had going on in the house. It's been a very busy time and I have payed the price somewhat. The stiffness in my joints has returned and the internal agitation in my system has been present, but worst of all my sleep pattern which had been excellent in recent months has been disrupted and for the last two nights I've found myself lying awake for hours in the early morning unable to get back to sleep. I thought those days had passed. Tomorrow I'm going to see my cranial osteopath. His visits do often help my sleep, so I'm hoping he can work his magic tomorrow .</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-22302748784118651392014-10-26T21:24:00.000+00:002014-10-26T21:24:27.123+00:00Sugar and ME/CFS symptoms<div dir="ltr" style="text-align: left;" trbidi="on">
Silence on the blog is generally a sign of one of two things:<br />
1) Feeling so bad that I don't have the energy or wherewith all to type<br />
2) Things going so well I don't feel the need or am too busy catching up with other things.<br />
I'm pleased to report that in this instance it is a case of the second - feeling pretty good and busy doing other things : )<br />
I've been having a pretty good time energy wise over recent months. The fact that I wear a fitbit means that this is just not anecdotal or spurious self reporting, I actually have the figures to prove it. I very rarely look at my fitbit stats on the Fitbit website, normally just noting my daily totals mentally at the end of a day and reading my weekly stats sheet when it comes through by e-mail on a Monday morning. Last week however I did take a look at the website where it is possible to see your historic figures represented graphically. It was quite striking that in June of this year my step count took a definite "blip" upwards, where they have managed to stay since.<br />
This positive blip is very welcome as it follows on from a long period of feeling that I was going backwards that seemed to last from the end of last summer (2013) through to this Spring. It's easy when you are in the midst of such a "down" period on the roller coaster to think that it's not going to change again and you are fighting a losing battle. Who knows what makes the change from backwards to forwards, not me for sure. I have just carried on trying to do the right things and hoping they would make the difference. Two specific things spring to mind about this latest phase though. May/June was a time when I was taking laxatives for a while. They made me feel awful, I felt like they were completely stripping my body of any goodness, but I do wonder if they were taking some badness with them too! When I stopped taking them and my body was getting back to normal, that was when I felt a boost in my physical well being. Maybe it was just the contrast with how bad I'd felt whilst taking them, but it definitely felt better. It does make me think about the theory that our gut has bad bacteria in it and the digestion process isn't working properly <a href="http://www.medscape.com/viewarticle/732378" target="_blank">more info about this theory</a>. Maybe the laxatives helped strip out the bad bacteria and start again with a clean slate as it were. That's what it felt like.<br />
The other thing that may have had a difference is the fact that I have been on a low sugar diet since earlier this year and I wonder if that is now starting to have some effect. I really think that the low sugar diet has made a difference to my hormones. My menopausal hot flushes have stopped since I reduced my sugar intake. I am trying to keep my sugar intake as low as possible and that includes natural sugars from fruit. So I am replacing my previous fruit intake with more vegetables and savoury snacks. The daily recommended intake of sugar for women is 50 grammes. If you're not keeping a check on it, it's easy to exceed 50gms. If I'm eating anything that comes wrapped or in a packet, I'm looking for it to have 5 grammes or less of sugar per 100 grammes, that's pretty low. I'm not being over the top about it, today we had a big family Sunday lunch with the grandparents and I baked a desert for everyone and had a piece myself, but this is the exception these days and not the norm. In fact one of the interesting things about doing this is noticing just how quickly your tastes change. I now find many things I used to eat just far too sweet for me these days.<br />
<br />
So these are my two theories as to what may have given me my recent boost, it's probably a combination of both. In my next blog post I'm going to detail what I've been doing with all my extra energy : )</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com1tag:blogger.com,1999:blog-2907796984497866431.post-77251114796138408952014-08-10T10:44:00.000+01:002014-08-10T10:44:51.316+01:00ME/CFS charity donations<div dir="ltr" style="text-align: left;" trbidi="on">
Last New Year I set myself the target of trying to raise some money towards one of the very worthy ME charities. I didn't manage it last year, but I am happy to say that today I have sent £274 to Invest in ME's <a href="http://www.ukrituximabtrial.org/" target="_blank">Rituximab trial</a> research project and $452 to Dr Ian Lipkins <a href="http://www.microbediscovery.org/" target="_blank">Microbiome research</a> project.<br />
This money came from a Charity Curry Night which raised £548 and it feels really good to be able to send this money off to these really important pieces of research. I hope to be able to do more later in the year. The Rituximab trial has now reached it's initial target for the early stages of the project to begin. Dr Lipkin's still has a very long way to go. They are trying to raise $1,000,000 and have just passed the $100,000 mark.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-15518741147429943722014-08-06T19:10:00.000+01:002014-08-06T19:10:58.335+01:00Muscle acid and ME/CFS<div dir="ltr" style="text-align: left;" trbidi="on">
Yesterday I had my second "go" at the "normal" yoga class. Whereas last week I spent the whole lesson smiling because I couldn't believe I was taking part and managing so well, this week my face was more serious, showing much more earnest concentration. I'm not sure this was a good thing as a couple of times I had to check myself from pushing and trying too hard. I can't help that, it's in my nature and something that I have struggled to deal with mentally - the having to hold back and pace oneself. I enjoyed the class and managed about three quarters of the poses. I was most happy with the fact that there was quite a lot of bobbing up and down from front lying, to forward bends on the feet to completely upright and then down again. Normally this sort of activity induces nausea and post exertional malaise due to Orthostatic Intolerance (OI), but yesterday I coped well. I didn't manage it all, but, gave it a really good go. So, maybe the Ivabradine that I'm taking for the OI is having some effect. Unfortunately, the battery had run out on my heart rate monitor so I was unable to check what was happening with my heart rate whilst I was doing all this bobbing up and down.<br />
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Talking of monitors, I have decided not to wear my fitbit this week, I did 47,000 steps last week another good one for me. In fact, I'm not sure how I'm managing that as my thigh muscles are so sore all the time, sometimes my knees too. Most of the time I am ignoring it and Ant kindly massages the knots out of them every morning. I am convinced this discomfort is acid build up in the muscles, <a href="http://www.cortjohnson.org/blog/2014/08/02/acid-accumulations-muscles-chronic-fatigue-syndrome-reversible/" target="_blank">this is an interesting article about that</a> In my case, exercise of the thigh muscles seems to mean walking! I am going to buy some beetroot juice today as I have read that drinking it helps to remove acid from muscles. Ant has also been encouraging me to breathe more deeply as the pain you feel in your muscles can be caused not by the acid but by accumulating too many hydrogen ions in the muscle, getting more oxygen in and more carbon dioxide out can help with this. Anyway, my muscles are struggling with activity and it's difficult to know what to do for the best - push through or rest them. At the moment i'm pushing through, because if I wait for them to be "OK" i'll be waiting a long time and not doing anything. Back to the Fitbit, I've been wearing it everyday for 18 months and I love it, I just thought I'd give it and me a week off!</div>
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Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-26368560176678478182014-07-29T21:22:00.000+01:002014-07-29T21:22:03.212+01:00Yoga and ME CFS<div dir="ltr" style="text-align: left;" trbidi="on">
Today I am feeling very pleased with myself. Once a week I attend a yoga class at a therapy centre. It's a very gentle 45 minute class where all the poses are either lying down or seated. I've been coping pretty well with the class so today I tried a normal yoga class. It was about one hour, fifteen minutes long and with my usual yoga teacher who knows me pretty well by now. I smiled my way through the whole class, I was so pleased to be joining in and managing so well. There were things I couldn't do and things I chose not to do as I thought they would be too much for my system, but there was lots that I could do and I really enjoyed it. At the end of the class both my teacher and I were so surprised by how much I had managed. Now I have to wait until tomorrow or Thursday to see how my body reacts.<br />
There were two reasons for wanting to try an extra yoga class, firstly, I just want to do some exercise and yoga is about all I can manage right now. Secondly, I have been finding out more about how people have improved their Orthostatic intolerance by being able to exercise. This is obviously difficult for someone with ME, but every tiny little increase I can make will help.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-77489620650867244032014-07-24T20:23:00.001+01:002014-07-24T20:23:08.145+01:00Meditation retreat and night tremors<div dir="ltr" style="text-align: left;" trbidi="on">
I've been a little remiss when it comes to blogging lately, but today I feel it necessary to put fingers to keyboard to document that on Tuesday night I had one of those horrible night time tremors. I can't remember the last time this happened - which is a good thing, it was obviously a long time ago. These occurrences were common at the start of my illness. I would go to bed and then wake up at about 1am ish with my heart racing, feeling hot and clammy but with cold extremities and an urge to empty my bladder and bowel, once I've done that and gone back to bed my body starts to tremble uncontrollably, sometimes in very noticeable waves. When it passes it's like my body is released from something's grasp and relaxes, but then I cannot sleep. The next morning my body is weak. And so it was on Tuesday night. I got up just thinking I needed the bathroom, but noticed my heart racing like mad. When I got into bed I just recognized all the signs and knew what was coming. This was upsetting as it hadn't happened for so long that I thought I had got over this sort of reaction altogether. I tried to control my breathing to see if that would stave it off, but eventually I just tried to relax into it and let it happen and take it's course. Ant was fab (again) he is very familiar with this scenario and knows just what to do, holding me firmly as I shake. Last night it was just the bottom half of my body and built up very slowly from almost externally unnoticeable tremors which gradually grew in strength and then, when it had done what it needed, it abated and was gone.<br />
The cause of this little hiccup is unproven, but my best suspicion is that I jarred my body when moving very quickly and suddenly to avoid a plastic cricket ball that was heading towards me at speed. I think that the sudden burst of movement involved upset my system somehow. Anyway, I woke up very weak yesterday and forced myself to go off to the therapy center for my regular yoga session. The session felt good, but the drive there and back was very hard work. I was in bed by 5.30pm and slept much better last night. Today I felt a bit better when I woke but have had to be very careful with my activity and minimize as much as possible. <br />
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Since my last blog post, I've had a lovely few weeks. Sadly the boost in energy that was mentioned in my previous posts has not hung around. It lasted 3 weeks and two days and gave me a real glimpse of how things could be. The most annoying thing of all is that I have no idea what caused that little energetic boost. I'm still doing all the same things now as I was doing then, but don't have the same levels of energy. I'm back to my 5000 comfortable steps a day. <br />
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At the end of June I attended a 6 day meditation retreat at <a href="https://www.sharphamtrust.org/The-Barn-Retreat" target="_blank">The Barn</a> in Totnes, Devon. It was so rejuvenating - not physically, but mentally and emotionally. I found it a very valuable experience. Two hours meditation a day broken into three 40 minute sessions, visiting speakers, lots of reading from a well stocked library, good food and some therapeutic gardening tasks. I really enjoyed it and although I felt guilty taking myself off there for a week and leaving the family at home, I have now convinced myself that sometimes we do just need to prioritize time to nurture ourselves. Strangely, since I got back my meditation practice hasn't been as good as before I went on retreat!</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0tag:blogger.com,1999:blog-2907796984497866431.post-23622132643787098362014-06-28T20:45:00.001+01:002014-06-28T20:45:25.106+01:00Another big day<div dir="ltr" style="text-align: left;" trbidi="on">
I checked out my fitbit yesterday and it is tracking steps properly, I just needed to make sure. Today the fitbit clocked up an amazing 11,490 steps! These steps were the result of taking "the eldest one" to an open day at the university of Birmingham and walking all over the campus all day long.<br />
I am in bed and exhausted, but exhausted in a good way. A smile came over me earlier today when I realised I was actually "sleepy" tired. Properly tired, not fatigued. I can probably count on one hand the number of times I have felt like that since the start of my ME nearly 5 years ago. It is the activity of the day that has made me tired.<br />
Yet again today my leg muscles and hip joints have been crying out to me and have at some points been quite painful. Climbing stairs was particularly hard, but at no time did I feel ill. <br />
Even after all that activity, I managed to come home and read a bedtime story to the littlest one. This might not sound like such a big deal, but on previous days (many of them) when I have been fatigued, reading a bed time story has been beyond me. It might be difficult for someone without ME to understand the effort involved in just reading out loud. Those who have experienced this type of fatigue will understand what is required to first read and then speak the words out loud when your body feels it has no energy to do so. It has been too much, but today even after my 11,490 steps and eating dinner and managing to hold a conversation at the dinner table (often also not possible at the end of a long day), I still managed -and enjoyed- reading the bedtime story.<br />
In addition, The busyness of the morning meant I forgot to take my heart medicine and I checked my heart rate throughout this busy day to find to my surprise that it was actually okay. Normally one of the first symptoms of fatigue is my heart rate rising and today that didn't happen.<br />
I find myself in some state of disbelief about what's happening with my body at the moment. I'm still part waiting for a fall from these heady heights. It has been 3 weeks and a day now.<br />
Tomorrow I go on a well timed six day meditation retreat.</div>
Beautshttp://www.blogger.com/profile/02904430375268751729noreply@blogger.com0