The last week has been really hard health wise. I haven’t been the sickest I have ever been but I have certainly been sicker than I have for a while. There is no “reason” that I can identify for this other than perhaps the decline in my health that I have been waiting for since we lost Mollie and Frankie. Stress, emotional upset and change can all upset my chronic health conditions and it seems everything wanted to bubble to the surface last week. I did just power on through which now I am wondering if that was the right thing because I am having more and more MG like symptoms this week – shortness of breath, limb weakness etc sorry I should have said my idiopathic hemifacial spasm the latest bullshit diagnosis for my Ptosis, totally ignoring all the other issues.
If I am honest there is only one symptom that has me terrified and that is when I will suddenly and for no reason lose the ability to take a deep breath. No matter how hard I try to suck the air in my chest fails to move. I end up taking a series of short breaths to minimise the panic that rises in me. I have an elephant sat on my chest who is refusing to budge and I know that if I went to hospital my breathing would be ignored and I would be labelled with a mental health condition rather than the fact that there is something going on at the neuromuscular junction which has been proved time and time again with the ice-pack test. Apparently for the latest neurologist I have seen for these symptoms back in 2017 I believe, it is just a placebo effect. Words fail me.
Sunday freaked me out a bit as well. I wasn’t feeling great when I got up and knew there were a couple of jobs that I had to do, then I could sit around and rest for the remainder of the day. Once those jobs were completed I noticed my legs had become exceptionally heavy, like there were lead weights attached. I could walk but it was very slow and shuffling because lifting my feet was taking a supreme effort. I attempted to climb the stairs but that was impossible. I may as well have been sat at base camp for Mount Everest without oxygen, as those stairs were impossible. After attempting three I came back down on my bum and then wondered how the hell I was going to stand up again. Thank god for Mr Myasthenia Kid being home and with it happening on a Sunday. He could help me to my feet and get me to the sofa, plus organise my medication.
You see I get to take Mestinon / Pyridostigmine Bromide for my PoTs symptoms. I usually dose as follows 7am 60mg, 11am 30mg, 3pm 30mg or 60mg depending on how I am feeling and then 30mg at 7pm. I have to be careful with Mestinon by body is extremely sensitive to it. Too much and I can be twitching all over but mainly my face and it can trigger terrible stomach cramps. It takes a lot for me to take another 60mg during the day but at both 11am and 3pm I ended up taking the full dose because without it my legs wouldn’t work. My legs not working is not a PoTs symptom, it isn’t an EDS symptom either. There is no medical explanation for this symptom, other than the fact the medical profession believe its all in my head. Which is why when my breathing gets difficult I panic. This medical condition that appears so much like MG / Neuromuscular junction disease will be ignored and it could end up killing me. I am lucky, my symptoms are mild but I have bouts like this especially when the weather gets warmer where my body fails to cope. I worry one day I will be so ill that the doctors refusal to think outside the box will mean that I will be killed by medical negligence and that is a fucking scary thought.
I mean if there is nothing wrong with my breathing……why have I had home oxygen since 2009? In the current economic climate of ongoing austerity since 2010 why if I don’t need support for breathing on occasion why has this precious money wasting resource not been taken from me? Home Oxygen can’t be cheap, I have an oxygen concentrator a machine that pulls oxygen from the air and then feeds it down a nasal cannula at a purer form. In case of power cuts I also have to have a huge oxygen canister in the house, I have to notify the local fire-brigade and I am classed as a vulnerable service user by the people who maintain the power grid. The canister also impacts my home insurance cost. If I didn’t need it I would get rid of it, not only are the canister and oxygen concentrator ugly they are taking up valuable space in my small home. So in an age of cuts to all services who is covering their arse by allowing me to keep my home oxygen?
Home Oxygen won’t save me if I end up in a full blown Myasthenic crisis. This is where the muscles around the lungs and the diaphragm become paralysed and can’t move so you can’t get the air in as when you attempt to breath nothing happens. In this situation you need to be in hospital on C-pap or Bi-pap or in the worst case scenario put into an induced coma whilst they ventilate you – sticking a tube down your throat and breathing for you ( intubation ). Today as I am writing this the elephant has returned, breathing is hard. I took my mestinon at 7.30am already my right eye is starting to droop, its seems I may have to take my next dose earlier.
The Myasthenic like symptoms are the worst thing I currently deal with and I am lucky they are mild the rest of the time. Last week was like a smorgasbord of every medical condition I have. My PoTs symptoms were crazy – heat induced despite me upping the salt tablets ( to 8 a day ) there were multiple episodes of pre sycope ( near fainting). I had vertigo luckily I caught that attack very early so I only had to endure the room spinning for an hour but it leaves me tired and feeling out of sorts. I had a migraine on Friday one of the worst I have had in months. It was actually the first migraine I have had since January 14th ( my last one was the Monday after Dembe came home with us). My Tinnitus has been so loud it has been difficult to hear the TV and radio. I have felt constantly exhausted .
Then there was the joint pain and my right shoulder continually fighting to escape it’s socket. To be honest I have only scratched the surface of what I have dealt with over the last 7 days. I really don’t like to say much most of the time because I don’t want to be accused of moaning but if I stay silent about it people think that you aren’t as sick as you claim you are. You just can’t win, you’re an attention seeker if you say something and a liar when you don’t. It drives me nuts. I stay silent because to be honest it is easier that way. I don’t want Jay aka Mr Myasthenia Kid worrying about me when he is at work, I don’t want lots of platitudes on social media. It isn’t because I think they are false it makes me feel like I am drawing attention to myself and trying to play the sympathy card and that’s just not me.
It’s been really hard this week being a puppy mum, I love Dembe dearly, I wouldn’t be without him but it is hard work trying to keep him occupied whilst using as little energy as possible. On the whole he is brilliantly behaved but like it is with kids there are days when he can be a little bugger and whilst amusing, it can be frustrating, especially when you aren’t feeling well. He is just a puppy though at a little over 6 months old and over time he will calm down. I guess I was so used to Mollie, Frankie and Willow being older and more sedate this has come as a real shock. Jay does loads, he gets up and does his breakfast, he does all the walking and he comes home everyday for lunch to give me a little break and check I am ok. I take my hat off to those of you who are chronically sick and have children, I don’t know how you do it.
It has been a hard week health-wise, I just hope things start to settled down very soon.