Saturday, 22 August 2015

ME CFS pacing

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.

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.

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.

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.

Saturday, 15 August 2015

6th anniversary

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.
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.

Thursday, 13 August 2015

It's been a while...

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.

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.

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.

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.

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.

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.

A few weeks ago I was diagnosed with skin cancer, Basal Skin Carcinoma  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.

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.

Tuesday, 26 May 2015

Not quite ready for rhubarb chopping yet

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.
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!
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.
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.

Sunday, 24 May 2015

Cranial osteopathy really helps (again!)

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.
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.
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.
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.

Tuesday, 19 May 2015


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.
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.
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.
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.
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.
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!)
The doctor that discharged me asked who my ME specialist is.  I told her I didn't
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.
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
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.

Tuesday, 12 May 2015

My trip to the Royal hospital of neurology and Neurosurgery for POTs testing

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.

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.

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.
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.
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.

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.
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.

I rested for a while and then we decided to go straight on with the tilt table test.  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.
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.

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.
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.
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.

Thursday, 26 March 2015

POTs Treatment (Postural Orthostatic Tachycardia Syndrome)

On Tuesday I took a trip to London to attend an appointment at the National Hospital for Neurology and Neurosurgery .  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.
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.
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. 
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.
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.  There are different types and causes of POTs and when 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.
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.
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.

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!

Wednesday, 11 March 2015

Fustrating ME relapse

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.
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.
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.

Friday, 6 February 2015

POTs at University College Hospital

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 flipping the dog 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.

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
at the National Hospital for Neurology and Neurosurgery in London.    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.

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.

Sunday, 25 January 2015

Paying the price with my ME/CFS

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.

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?

All the more frustrating as my excellent Christmas present was a Kettler recumbent R exercise bike:

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.
It is electronic and I can program it in lots of different ways including by heart rate which will be useful.
 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.

Friday, 2 January 2015

A Step up in Steps - the Fitbit keeps track

What a stupendous end to 2014.  A city break away in Copenhagen saw my past four days step count look like this:
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 soooo 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.
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.
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.
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.
Tivoli Gardens early on New Years Eve.