Friday, 28 February 2014

The fustration of ME overwhelms me

Yesterday was not a great day.  I got up and on autopilot left the house at 7.10am to take DD1 to her school bus, by the time I got back I realised that all was not well and wondered actually how I had managed the driving.  Fortunately nothing major was planned for the day.  Ben and I sat in the office whilst he did his school work, but really all I wanted to do was lie down.  When we'd finished I made him  some lunch and we sat on the sofa for the rest of the afternoon and watched two films.  It was during this time that I struggled.  I watched Ben on the sofa next to me, a healthy 8 year old boy, adopting the position and demeanor of his ill 47 year old mother and just thought this is not right.  For the first time EVER I actually thought he might be better off at school than being home schooled.  This is a sign of how low I had slipped mentally.  There's no way when I'm feeling good that I think that is the right place for him.  At home he is learning well and in advance of his peers in most subjects.  He has good home educated friends who he sees regularly and other outside interests - today he is off at forest school which he wouldn't be able to do if he was at school.  But, some days it is so hard for me.  Not often, but, he is dependant on my energy levels and they are just not reliable.
At 4.40pm I dragged myself off the sofa to take Ben to his swimming lesson, it wasn't far away by car (less than 10 mins) and I thought manageable.  I was glad I took him as it did mean he was at least a little active for that half an hour.  When I arrived at the pool as someone I knew asked how I was  -  just in a friendly hello sort of way - I had to stop myself bursting into tears because I felt so awful.
We made it back to the sofa and more video.  When Ant came in from work he had to cook the dinner, collect DD1 from her bus - which takes 40 mins - put Ben to bed and then go and collect DD2 from her evening activity,  that was his evening gone and that makes me feel worse.
I was in bed by 7pm and slept relatively well until 5.00 this morning.
Today I feel much better, drove to the bus without any problems and although my legs are weak and a little trembly on the stairs I actually feel pretty can that be????  It is soooooo frustrating!
I do feel that my symptoms are still being exasperated by my menstrual cycle and am looking forward to seeing the endocrinologist to hear her thoughts on the matter.
Today, although still a little tearful, mentally I'm in a much better place, but it just goes to show how easy it is for the mind to follow when the body is weak.  I read something on twitter yesterday that made me smile.  It was a Dr talking about how to tell the difference between someone who is depressed and is fatigued and someone with ME.  If you ask them both "if your energy returned to you right now what would you do?"  the depressed person will say they don't know, but the ME patient will reel off a whole long list of things they are just desperate to get on with.  I have so much I want to do, besides the normal, besides the running of the house and the nurturing of my children there is so much more I want to do.  The truth is, when I have a day like yesterday I don't even have the energy to nurture myself.  Today I have a little energy, so I'm going to start with me and then see if I can reach out.

Tuesday, 18 February 2014

Ivabradine, an update

I have been taking Ivabradine for nearly two weeks now and it's been a bit of a mixed time.  It didn't start off too well, for the first two days about an hour after I started taking it there was a horrible feeling of malaise and a real heaviness in my legs, going upstairs was hard work, it felt like ME symptoms.  On the afternoons of those days though it would clear and felt okay.  That was followed by two and a half days with an almost constant headache.  Not a bad headache, but just there in the background, and then that disappeared and I felt fine.
The Ivabradine has definitely had an impact on my heart rate.  My resting heart rate has now dropped to the late seventies early eighties.  When I stand, I do still get an increase in heart rate, but not the previous thirty beats per minute increase, it goes to early nineties and maybe peaks at 100.  Which is great, because it used to go to 115 or 120.  My body does feel a little calmer internally.
I suppose in the back of my mind I was kind of hoping maybe I didn't have ME at all, and that all my symptoms were down to the POT-syndrome, so once I started taking this medicine all would be well. Sadly, although my heart is calmer the ME is still there.  This was tested this week when I had a late night (11pm) and woke the next morning with a very weak body.  I haven't put my body through any real physical test since starting the Ivabradine, so will be interested to see how it reacts to that.
It appears to be a very short acting drug, there have been a couple of morning where I have woken and my heart rate has been raised, it's like the effects have worn off until I take the next dose, so the Pharmacist has told me to try and take it very regularly at accurate 12 hourly intervals if possible.  Almost two weeks in I'm feeling better about taking it and don't seem to have any negative side effects.
I've had two appointments recently.  On Friday I had a Perrin appointment and felt okay in the afternoon (which is when it normally gets me), but felt rotten the next day.  Fortunately I had a cranial osteopathic appointment that day and that made me feel better and I slept well that night.
Generally sleep is bad at the moment.  I am waking my usual couple of times in the night and managing to go back to sleep well, but then I'm just waking really early in the morning - around about 4.30am at which point I can't go back to sleep...IT'S TOO EARLY!  If it carries on I am going to consider taking something, maybe Valerian or the Melatonin that Dr Myhill recommended, but I really don't want to be adding any further supplements to the list if I can avoid it.
Today I got a phone call from The Royal Salford Hospital saying that I had an appointment with Dr Mukherjee at her ME clinic.  She is an endocrinologist with a special interest in ME so I am going to travel up to Manchester to see her.
I am back on a much more strict Paleo diet.  I have been reading an awful lot about gut microbes, leaking gut and fermenting gut in ME that I feel it's worth giving it another go.  Refined sugar has gone along with most grains and dairy.  I guess it's not surprising that the chance you might feel a bit better is a very good motivator and I'm not finding it that hard really.  The exception to this is when i eat out with friends and I am allowing a few indiscretions then.
My trampolining is now up to two minutes a day (when weather allows) and my feet are now leaving the trampoline : ) 

Thursday, 6 February 2014

Ivabradine for POTs

Today I had an appointment with my Cardio consultant at the local hospital.  At my previous three appointments he has asked me to try the drug Ivabradine to see if it would help my Postural Orthostatic tachycardia Syndrome (POTs).  I've been holding off, hoping that my heart rate would sort itself out as my other symptoms improve, but it hasn't really happened.  Anyway, yesterday morning, knowing I had the appointment today I took my first dose of Ivabradine.  I took it at about 6.30am and felt pretty rotten with a feeling of malaise and heaviness most of the morning.  Stairs were the worse with a horrible feeling of gravity pushing down on me as I climbed and very heavy legs.  In the afternoon I felt better and my heart did feel calm.  I put my heart rate monitor on for a couple of hours and my impression by the end of the afternoon was that there didn't seem to be much effect on my resting heart rate which was around 86 bpm whilst seated, but that it might be having some effect on my change to standing.  When I stood my heart rate was staying in the low 100's (up to 105), whereas some days standing can take it to 115 to low 120's.
I took a second dose at 7pm and felt horrible again but not for so long this time and when I took the third dose this morning again I felt horrid and heavy, but not for very long.
So I went along to todays appointment able to say that at last I had tried it.  My ECG heart rate on getting there was 105 bpm and my Doc didn't think the Ivabradine was really having any significant effect.  He suggested that I try it for a month - it is only day 2 after all - and when I'm a bit further in to the month he will do a 24 hour trace so we can get a picture of what's going on and whether it's helping.
Ivabradine is an angina drug and is not licensed for POTs, but some doctors have trialed it and had success with it for treating POTs - Article

Tuesday, 4 February 2014

Quick update

It's been just over three weeks since my last post, so I just wanted to do a quick update on what's happening.  It's been a busy three weeks with both Ant and two of the children having birthdays in the space of two weeks.  All that excitement and activity not long after Christmas does take it's toll somewhat.  I felt I had underplayed the Birthdays a little this year, normally I like to make such a fuss, this years celebrations were a little understated in comparison.  I was however,well organised and had all presents bought and wrapped well in advance so there was no last minute rushing around.
 In addition a close relative has just been diagnosed with a serious medical condition and we are waiting for test results and treatment information.  I'm supporting as best I can, but know at some point the emotional side of this will have an impact on my fatigue (it may already be happening).
So, I'm not feeling brilliant but there are lots of things going on that might have contributed to that.  It's not a major relapse or anything, just a general feeling of "under the weatherness", fatigue, heavy legs and the vagaries of a sore throat coming and going.  There is no excess energy once the necessary has been done.

On a more positive note, something exciting happened today.  I have been reading alot of research extracts recently and had decided that I was going to start my own podcast looking at some of the research taking place around the world and interviewing some ME experts.  Today I have had some correspondence from an American Doctor that I had approached to see if he would be interviewed and he has agreed!  I'm not going to say who it is at this point, but I am very excited to get this new project rolling.

Trampolining progress has been slow due to the foul rainy weather.  I'm only up to 1 minute 45 seconds due to the fact that I'm only increasing by 15 seconds every 4th session and I'm not getting out there on days when the trampoline is too wet.  Still, slowly but surely is a good way to go.  My bouncing is becoming a little more vigorous and I'm feeling much better when I bounce.  At first I used to get a horrible sludgy feeling in my head whilst I was bouncing and the gravity felt like such a heavy weight pushing down on my head.  It doesn't feel like that any more.  It does make me feel a little nauseous though.  Ant thinks my sore throats started when I started bouncing, he relates the two, I'm not so sure.

I've had my mitochondrial results back from Dr Myhill, I will do a separate blog post about them soon.