home oxygen

Hello Darkness My Old Friend

/ RachelMorrisMcGeethemyastheniakid / Leave a comment

Last week was a bit of a nightmare. I was so fatigued it was ridiculous. I was sleeping hours but still felt like a zombie when I awoke. My legs felt like they were made of lead. My brain was sending the messages to them to move but they would refuse, causing me to fall over. When I could move them they felt as if they were made of lead. Climbing the stairs (which I limit anyway) felt like I was scaling mount Everest. Then on Tuesday afternoon, I recognised a feeling that I haven’t had in a long time. My face, eyelid and eyebrow were beginning to drop. I ended up going to bed for a lie down and slept for three hours. When I awoke the feeling was gone and I was relieved to have dodged a bullet. But I hadn’t, when I woke up on Wednesday morning this had happened.

 

 

Now I have a level of Ptosis everyday, normally unless you were specifically looking for it you wouldn’t know it was there. My eyelid droops to where the pupil starts to become obscured. That level of Ptosis I can cope with, it doesn’t affect my vision and it doesn’t tend to make me feel unwell.

Wednesday morning I woke up feeling horrendous, arms and legs both felt like they were made of lead. I was dizzy and due to my eye being nearly completely closed I couldn’t see very well. My forehead felt as if it was being ripped in two, with my left eyebrow arching in an attempt to keep the right eye open, only it was failing miserably. After a couple of hours I decided this really wasn’t worth the hassle of trying to stay out of bed. At 8am (I had risen at 6am) I gave up, took some HuzerpineA (like a herbal Mestinon as I can’t tolerate the real stuff) and set my alarm for 9am hoping when I woke up the Ptosis would be gone.

 

I gave myself an hour as like Mestinon this stuff takes about 20-30 minutes to get working. Plus I was also having a friend over, so needed to be washed and dressed before she arrived. I naively thought an hour in bed would be the magic cure. What an idiot! When it’s bad like this even proper Mestinon can fail to work. I should have realised when my alarm went off, that this was not a good day. I never fall straight back to sleep after being up for a few hours. I messaged the friend to advise them I would have to cancel, something I hate doing as it means I have knackered their plans for the day. She was absolutely fine about it but it doesn’t stop the guilt over cancelling. I text my husband to let him know I would be staying in bed for the day and that I might need him home if things got worse. I then went straight back to sleep.

 

Most of Wednesday was spent asleep if I am honest, I have a few brief periods awake mainly to get something to eat and have a cigarette. The fact that I was so utterly incapacitated scared me. This reminded me of the bad old days when I first got sick in 2007. How I had gone from working full-time to a year later being ill-health retired. I hadn’t been this sick what I call MG sick in years. Probably close to nine years, so you can imagine my shock, when this came totally out of the blue.

 

Thursday I woke up feeling an awful lot better but then by the afternoon was back in bed on home oxygen. I couldn’t take a deep breath in, as my chest just felt like it couldn’t expand. This really scared me as I have been blue lighted to hospital barely conscious due to breathing difficulties. This was exactly how it had started in 2008, I tried to walk across the lounge floor but stumbled as my legs wouldn’t work properly. The following day whilst hubby was out getting some shopping (helpfully forgetting to take his mobile phone) I had collapsed unable to take a proper breath in. I’d had to call 999 myself, trying to stay calm whilst the supply of oxygen in the house felt like it was running out.

There have only been a few times in my life I have been utterly terrified by my symptoms and that was one of them. I ended up being wheeled straight into resus, placed on oxygen running at 15 litres a minute and I still had very poor oxygen saturation. They  discussed with me about putting me into a medically induced coma and putting me on a ventilator. They wanted Jay to be at the hospital, I now realise it may have been to say goodbye, at the time I was oblivious and said he had to look after the dogs. I look back now and it moves me to tears. I wasn’t frightened at the time I was just exhausted from not being able to breathe.

 

I had all this running through my head again on Thursday, thankfully within two hours I was feeling much better but I had to spend the rest of the day in bed.

Gradually I have improved and back to my normal (but limited) levels of activity. However I am still having days where my arms and legs are refusing to work the way that they should. Today I was trying to do stuff around the house and I kept falling over my own feet as they felt as if they were stuck to the floor every time I went to move. I have started choking again (frequently) on fluids, something which hasn’t happened in a really long time.

It’s frustrating that despite in many aspects of my health improving a great deal, no more headaches, much less joint pain since giving up dairy, that this has started up again after leaving me alone for such a long time. Thankfully I have a hospital consultants appointment coming up at the end of next month and I will be able to discuss it with him then. I think it maybe time to bring up the possibility of Myasthenia Gravis again as seronegative MG seems to be much more accepted than it was ten years ago.

 

This song was going through my mind the whole of Wednesday and Thursday

 

 

A general update

/ RachelMorrisMcGeethemyastheniakid / 3 Comments

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

Octreotide:
In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.

B12:

I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.