Who does the word bedbound belong to? 

I often find that people don’t understand what I mean when I or other people say I’m bedbound. I’ve had people suggest my family members should bring me back to my home city, and worse still people used to tell my ex they should bring me to events. All of this despite knowing I’m bedbound. I think there’s a few factors that cause this. One of which is of course that people find it very difficult to understand that being so ill that you can’t move from your bed is possible, but also I think there are issues with the language that the chronic illness community uses. I’ve been struggling to think of a way of wording this for a long time when initially all I could think of was a frustrated ‘it’s my language dammit’ which doesn’t convey my point very well, or the fact that I’m not trying to portray any ‘iller than thou’ vibes, or to leave other less impaired people without language for their experiences. In basic terms the problem is that people who are less severely impaired than myself (or in different ways) use the only language I have available to describe my experience. This in turn contributes to the fact that when I use this language to describe my own experiences people think I’m less severely impaired than I actually am because they’re using these other people’s experiences as their frame of reference.  This issue is mostly prevalent on social media and in chronic illness circles however I’m sure people use it in their every day life too.

Here are a few examples 

‘I’m bedbound’. I had previously assumed that this term meant spending all of your time in bed, but I have heard people use it in many different ways. The two main times I find difficult is when people use the term to

a) refer to a relatively short term period of illness. For example saying that they were ‘bedbound yesterday’ or referring to a period of recovery time spent in bed following a busy day as ‘bedbound’. 

B) Use the term to refer to the fact they need to spend time in bed as ‘bedbound’. 

To me being bedbound is not a short term state. Some people might be bedbound for a period of their lives and then recovery or relapse in and out of this state, but it is not a short temporary state. Using the word bedbound to describe this experience makes it difficult for people who are bedbound to express this without people assuming that it is a very temporary state. I do believe there are ways of expressing the experience (which can be a very difficult experience) without using this language. Examples might be ‘I had to spend all day or *insert amount of days’* in bed’ 

B is a little more blurry. At which point does someone ‘qualify’ as being bedbound? However I do believe that some use this language far too easily. To me somebody is bedbound when they are either unable to leave their bed at all, or they can only do so to walk/wheel a very short distance to the toilet a few times a day. If someone spends their time in bed but is able to walk to the kitchen to get food, to the toilet etc then I’m not sure I would personally call that bedbound. I have experienced times myself in the past where I spent days in bed except for going to the kitchen for basic food and to the toilet using my powerchair, but I did not use the term bedbound because this was not a long term experience, and I was not entirely confined to bed. For those who can do more than this I’ve heard other people use some terms that were helpful such as ‘bedbound except for short trips out’, or ‘bedbound 90% of the time’. Nobody should have to justify their own experience in any way but this first point does make it very confusing for others when for example somebody is up and about at events the next day after having been ‘bedbound’ according to social media the day before. 

I’m almost bedbound’

I think there are times when this is very much true for a person but I do think sometimes it shows a fundamental lack of understanding about the experience of being bedbound. I think the main tines I’ve had issues with this has been when people have told me personally this about themselves knowing my personal experience and it has therefore felt like they are relating their experience to mine. It can be very difficult to hear somebody who can walk and leave their home compare their experience as being almost the same as mine because I feel there is a big gap in impairment between this and being unable to stand, sit upright or leave bed under any circumstances. I went rapidly from spending most of my time in bed, using a tilting chair and requiring a lot of care right down to being bedbound, barely able to move and in total darkness. Trust me these experiences feel worlds apart, and even now when  I am much more cognitively able and have more movement, my current experience still feels worlds apart from the days of needing to spend most of my time in bed and feeling repercussions when I didn’t

I’m completely bedbound.

I started using this phrase myself to make it clearer that I cannot leave bed at all, but I’ve heard other people use it who can leave bed. I don’t understand the need to add completely as well as the word bedbound of you’re not literally ‘completely’ bedbound. 

‘I’m 100% bedbound’

This has been  another of the phrases I have used and it can be very helpful as well as being usable by other people to describe that they spend a significant amount of time in bed (varying the numbers). However I have heard people use this phrase when they are not 100% bedbound thus making it harder for me to explain my experience. 

Another similar phrase I have heard other people use is 

‘I have *insert number* hours energy each week’ or ‘I have the equivalent of about *insert number* of days activity to a healthy person’s week’. 

This can be a very useful way of explaining your experience to others, but I  feel sometimes people choose an arbitrary low number, or perhaps they are describing the number of good hours (without specifying as such). To put it another way, if someone says ‘I have 10 hours energy per week’ but they are able to prepare meals, walk, complete self care independently, and sometimes leave the house then next time somebody else comes along who can spend no more than 10 hours a week doing any activity whatsoever except lying in a dark silent room tries to explain their experience using this language, people may not realise they really do mean it.

I’m out of spoons’

I know of people moving away from this theory for various reasons, one of which is that people use ‘out of spoons’ to mean different things. For example some people have an impairment that relates to one specific function, or that is non systemic for example arthritis in one joint. Use of ‘I’m out out of spoons’ could range right from ‘my ankle hurts’ to ‘I can’t walk any further’ to ‘I cannot do anything but like in a dark room in silence’. People can also use it to mean that they have ran out of the specific amount of energy for the day. It could mean if they go any further they will start to feel unwell, or that if they go further they will begin feeling more unwell. It could mean that if they do more they risk damaging their body. It could mean they’ve used all their energy with reserves to spare, or it could mean they’ve used all their reserves and will suffer for having done so. In this way the problem with common language is when people mean such a diverse range of things.

I think part of the problem is that we have a real lack of language to explain our experiences. It might be really helpful to have one word that explains the need to spend a lot of time resting in bed, but I don’t think the answer to that issue is to use the only way someone who can’t leave bed at all has to explain their experiences. The irony of this is that I actually hate the word bedbound! This is largely due to its similarity to ‘wheelchair bound’. Though there is a distinct difference in that where as nobody spends 24 hours of every day in their wheelchair, some people do spend 24 hours of every day in bed. Really we should not have to justify ourselves at all, but it can be very important to have the tools to explain to people that you can’t leave your bed or home when trying to receive support whether that be to a support worker, on a benefits form, or to friends and family who might otherwise not know how to support you or worse still simply not understand why you’re no longer attending events or trying to hang out with them.

The message id like people to take away from this blog is to think about the language that you use, and whether you using these terms will leave someone more severely impaired than you without the language they need to communicate their experience which can be very isolating indeed. 

Secondary affects of being bedbound 

This is a difficult post to write.  Unfortunately I have to admit that there have been secondary issues thanks to being bedbound.  These are things that are difficult to talk about.  I’d like to shake off the idea of ‘deconditioning’,  but of course we can develop  secondary issues due to being bedbound or immobile.  The idea that I am bedbound due to deconditioning is nonsense,  but the longer I stay in bed the more issues that could develop.  I thought I would outline some.  Some won’t be solely due to being in bed.  


My legs no longer go straight out in front of me while lying down without pain.  If I am lying on my back they must be slightly bent and I often need to bend them further for comfort.  This is due to tight/shortened muscles.  Worse is that if I am sat up they want to bend to 70 –  90°.  This poses a few problems.  It makes sitting up in bed difficult.  It will also cause problems with using a chair because due to orthostatic intolerance I need my legs up,  but due to this I need to be partially reclined if my legs are up.  

I also have foot drop which is where your feet point downwards. I experienced this prior to being bedbound too but back then my foot drop was floppy where as now there is restriction and pain in moving the foot to a flat position.  This was helped by having a cushion at the bottom of the bed so that my feet couldn’t drop very far but I had to stop doing this when I started getting pressure sores and so now I have a heel pad instead which doesn’t do the same thing.  

These problems are not inevitable in all bedbound people but they have possibly happened due to my inability to have even passive physio therapy to stretch my limbs as well as spasticity and the position I sleep in.  I do what I can when I can but it won’t compare to someone lifting my limbs and moving them for me.  
These problems could also cause issues should I learn to walk again.  It’s another issue to overcome should I get to that point.  In an ideal world I’d have brought these things up with a physio months ago,  but as those with M.E and in particular severe ME will understand,  physiotherapists rarely understand our intolerance to exercise/exertion and so as much as I’d love to be able to see them and say ‘these things don’t work for me,  what else do you suggest?’  I know that in reality they’d likely continue to advocate the methods that would be harmful to my health except now I’d be seen to be uncompliant. Much better to let them forget I exist.  

Popping hip 

I don’t know what’s going on but my hip joint feels uncomfortable/painful sometimes and can be relieved by ‘popping’ it by bringing the knee towards my chest.  This can only be done once and the leg visibly changes in length as I do it so I have no idea what is going on… But since my gp is so unsupportive,  and I can’t do physio  there is no point in bringing it up. One leg also looks shorter than the other when bent.  

Pain from immobility

Pain from various forms of immobility.  In particular my back can get quite painful.  I’ve spent much of the last few years with my arms at either side of me and only moving towards my midline.  It’s only in the last few months I’ve felt able to cross the midline and do things such as hug myself or reach one arm across my chest as a stretch –  so my chest and back have cramped up.  Also my body has spent years continuously in contact with the bed with only a few breaks of pushing myself away from the bed briefly.  The ot I saw recently said that this can mean your body gets very sensitive and could explain the severe tingling pain I’ve experienced when using a hoist sling previously. Even briefly leads to pain for hours afterwards. 


My muscles have atrophied.  I have quite a bit of movement now but haven’t always and since I’m not weight bearing my muscles have atrophied a bit.  This leaves the fat kind of hanging off places. This means I’ve lost some strength so that if I did improve functionally I might not have the muscle available to me to do the things I would feel well enough for. As ME makes exercise and exertion make me ill,  it is very difficult to regain lost strength. Another hurdle should my health improve enough to be more mobile. 

Worsened orthostatic intolerance? 

One of the big reasons I’m in bed is because of orthostatic intolerance.  I just can’t sit up without becoming ill.  But now I’ve been in bed so long it’s inevitable that lying flat will have added some deconditioning induced orthostatic intolerance on top. I know that being hoisted would make me very dizzy and so would need to get used to that,  but how can I know what is deconditioning and what isn’t?  It’s very tricky.  It’s all so blurry that I don’t even know if I am experiencing this, I can just assume so.  

Sleep problems 

I live in a dark room so have little sense of day or night.  I am in bed 24/7. This means sleep hygiene goes right of the window.  It’s a struggle to sleep.   In fact I’m writing this at 5am.

Future incontinence from catheter use 

Before needing a catheter I was partially incontinent despite various treatments.  However due to having had a catheter nearly 3 years my bladder will now only hold a small amount before it becomes painful and releases the contents.  I never planned on having a catheter in this long.  The future plan will depend on a few things.  E.g whether I am well enough to manage pad changes,  whether the incontinence can successfully be contained by pads, whether the incontinence is painful (spasms can be very painful.  Especially if the sphincter clamp shut at the same time),  whether I am likely to experience retention again,  and how likely it is I will experience any improvement. Recently when I had a catheter blockage my bladder emptied around th room catheter  whilst tilt was in place, but would not empty when the catheter was taken out despite spasms, so i expect the retention is still there.  Honestly I will most likely as for a suprapubic catheter as soon as I am well enough.  This is where the catheter passes in the lower abdomen (pubic area) rather than going through the urethra. This will have the benefit of not being anywhere near my bladder neck which means it won’t be able to spasm around the catheter and block it. It also means that there is somewhere else for urine to come out of if there is a blockage (if retention is not too bad) though sadly this also means a chance of not being totally continent. This is something I can live with as it would be more comfortable. 

This post was mostly written a few months ago and I am finally finishing it just now. Thankfully I have now been referred for a sleep systems assessment. I am nervous as it is from a physiotherapist and there is no guarantee they won’t want to do other assessments or insist on physio,  but it would be amazing if I can find ways of reducing contracture, and maybe pain and spasticity by being adequately supported at night. Please keep your fingers crossed! 

Incessant Loud Noise – a poem 

​My PAs catch the train to work here 

It stops just down my road

And though the trains are loud 

For the tracks run so close to my window 

They are muffled;  

not only by my earplugs, but by my mind,

which has long distanced itself from their purpose;

Choosing to treat them more like the background 

hum of my fridge, or a dripping tap

Irritating-  but of no significance to my own day to day life. 

I’ve peeked outside my window as it gets darker 

(for this is all the light I can bare) 

And am always surprised to see people walking,  

boarding trains and crossing the footbridge.

Just as I forget they are there,  they do not know I exist either.  

Perhaps one day I will join them on the platform 

once again able to tune out of the lives inside these buildings,  

and relearn the true meaning of this incessant loud noise.

I can’t seem to get this to appear without double spacing,  so sorry about that. I’d be grateful for any other advice about how to format a poem such as this in general with things like punctuation and where each new line should start.  Thanks

Missing in action 

​I’ve wanted to blog for a long while but just not felt able to.  I have been dealing with many a crisis relating to my PA assistance (formerly agency care),  issues with social services,  and several legal issues.  It’s not just that I’ve been too unwell to write,  though there is that – it’s that I literally can’t write about the things that have been happening,  because if it were traced back to me I could get in trouble.  I’m also super paranoid about writing about the big dilemmas I face –  even though I feel I need an outlet,  and also think they are experiences worth sharing.  
So first of all I should probably check where i left off.  *goes to look up my last blog post*.  It was a short health update and saying that I’d started live in care. Well,  I’m still doing live in assistance (I am trying to call it assistance and not ‘care’).  It has been a tough journey but I have a few live in personal assistants and will also have some part time lens that come and do double up.  I hope so badly that things will work out with this new intake, as I have had difficulty previously that PAs didn’t fit my personality,  or they would only stay very temporarily.  I still need to recruit for one more part time PA,  or to use an agency,  though I am nervous about going back to having two people here at a time.  It can be exhausting.  
Talking of exhausting –  I’m not well, really not well.  I’m far more ill than I care to admit and on top of that I am struggling to sleep.  This has stemmed from the fact that I have so much to do.  First recruitment,  then training and legal issues.  It’s never ending.  It’s a job –  and I’m not well enough to work…. Yet somehow i find the adrenaline to push through, because what else is there?  I have gotten help thank goodness but have still had a lot to do by myself.  The biggest problem is that as I overdo it,  my body gets stuck in a cycle of fight or flight and I can’t rest or sleep. 

I’ve decided that I’d like to write more openly about being queer and transgender on this blog, though I’m not sure where to start.  I do know that I need to share somewhere that my gp is suggesting stopping my hormones on the basis I cannot get to hospital for a pelvic ultrasound.  I am hoping the gender identity clinic (GIC) will tell him that this is a bad idea,  and let him know these scans are a suggestion (all be it based on medical research) and not a prerequisite of hormonal treatment.  I’m hoping that he will be told that abruptly stopping someone’s HRT that they’ve been on for 7 years is unethical and physically and psychologically unsafe.  I am hoping he will feel very silly when realises the scans have nothing to do with my liver (which he seems to believe). What I want to say to him is whether he would prefer me to stop being trans,  or stop being severely disabled /bedbound, because that’s the position he is putting me in.  He was dismissive of other issues raised,  jotted things down as if he was going to come back to them (but never did); and had no suggestions for my sleep problems other than that I should come off my privately prescribed sleeping tablets (which is a ridiculous suggestion). Everything is put down to me being in bed,  and whilst yes some things can be exacerbated by,  or caused by that, it would be really helpful to be assisted with medical management for my situation as it is now,  not just point out how my being in bed is the main issue.  Of course all of this was said in that kind doctor voice that makes you feel like you’re being listened to and supported right up until they leave and you’re left realising that you’re in a worse position than you were when you first started.  
I have a lot more I’d like to write but will leave it there for now as it’s nearing 5am and I’d like to get this blog post up before the clock strikes 5. My next blog will include some poetry I have written in the last few weeks. 

Again please do share my blog anonymously.  Thank you.  

General update

My health is worse in some ways than it has been in a long time. This is primarily due to the fact I was served notice by my care agency and had less than 2 weeks to recruit. I’ve been going week by week sorting my care, and alongside actually getting used to and training new people as well as a totally different format of how I receive my assistance, it has been utterly exhausting. I am hopeful to keep doing things the way I am, but I just don’t know as I am waiting for a care plan. I could end up back with the same system that kept me in fight or flight (not that I’ve successfully left fight or flight entirely anyway).

I trialled the ketogenic diet for 2 months. Dr Myhill had recommended it twice by this point. I’m sad to report that it’s just another thing that made something worse. My heart would randomly becoming tachycardic, or just generally have a big heart rate increase as soon as I tried to do anythng. I’m currently struggling to work out how to increase my carbs without adding in too many things that hurt my gut or make the fermenting gut worse. So far I’ve been having butternut squash, 90% dark choc, carrots, oat cakes, and dried figs. I would like to stop the oat cakes and minimise the butternut squash….but it will be tough getting enough carbs in to stay out of ketosis. I’m not sure what my future plans are with Dr Myhill. All I know is I’mnot well, and the last two things she’s recommended have done more harm than good. I don’t know whether to get back to her asking for advice, or just go straight on to getting tests ordered. She wants to test for EBV. I don’t know if I had a viral onset. Yes, I did have viral symptoms when my health crashed in March 2010 which I originally saw as the start of my illness, but EBV NHS test was negative (apparently that’s not too uncommon). I also want to try and treat the fermenting gut with herbs instead of antibiotics. I’m scared though after what happened with the antibiotics. The pain in my hands and elbows has decreased a lot recently, but it’s still there. I still feel like the antibiotics did some damage. I don’t believe it is just a ‘herx’. This would mean Uva ursi and plant tannins but the plant tannins Dr Myhill recommended contain casein so I don’t know if I should go with those or switch to a similar one without which does not advertise itself as having the same affects on the body. It is very confusing. Perhaps I should consult dr Myhill before starting. Right now part of me feels like just doing it alone for a bit.

I emailed my GP 10 weeks or so ago about my bowels. He has finally gotten back to me and we are just trying to work out a date for him to come out with the district nurse. This scares me. There are several health issues that if I had a supportive team, I would bring up – but I don’t feel like I do, so I keep quiet about important issues. I just hope they will be helpful about my bowels, and also that they won’t be pushy about why I’m not moving forward. I’ve had an awful year if I’m honest. I’m always hopeful that this will be the time that I have the energy to give towards workign on sitting up, but then it is taken up by something care related usually. If I can get my current PA care system working long term, then I think it will really help me heal – although right now I’m so damn exhausted that I just don’t know when that will happen.

This week’s drama is that my bed is broken and need replacing. Problem is that I can;t get out of it. I’ve been so thankful to have PAs and not carers at the moment because the chain of events that needs to happen to get me in a new bed is so complex. It involves:
District nurse prescribing a new bed and mattress
Community equipment store providing the bed and mattress + setting it up alongside my current one.
999 being called and asked to come and move me in the next few hours (apparently this is the only way).
The equipment store coming the next day to pick up the old bed.
I just hope it doesn’t affect my health too badly if I’m honest.

Anyway it is very late at night and I really should try to sleep.

I have some things in my journal that I have thought I would like to share, but then again they feel too personal. It’s difficult to balance this blog and how honest I want to be.  I will at the least post some poetry soon.

Where I’m at

I’ve been struggling to write on this blog for two reasons. the first is illness. I’ve not been doing too well. The second is feeling totally overwhelmed and just not knowing where to start. I’ve been feeling a lot of emotions that I am starting to find the ability to name, and so I will use that as the basis for this blog.

I am grateful that I am no longer declining. For the first 4 years of my illness I declined fairly rapidly, in terms of how ill I felt, at what level i functioned; and more frighteningly – a rapid progression of physical impairment. It felt as if there must be a regular neurological attack that was causing various distinct impairments to emerge. I find it difficult to relate to the word ‘relapse’ as used in the ME/CFS community (something I want to write about in the future) because for me ‘relapse’ used to mean ‘something broke’. leg function, arm function, bladder function, swallowing, orthostatic intolerance. All of these were distinct events, and they were terrifying. In the last 18 months yes I have experienced crashes, set backs (things others might even call a relapse) but I have not had a distinct loss of function like this, and for that I am eternally grateful. In fact, my arm and leg function has improved tremendously. I think this is largely due to the enforced rest of lying down and not transferring in to my wheelchair. weight bearing and exercise was (and probably still is) a major trigger for periodic paralysis episodes for me to the point where these episodes blurred in to one big overriding physical weakness and loss of function. I do not know as yet if any of these problems have in fact been partially healed, or are just lying dormant until I weight bare again. I suspect a mixture.

resentment and grief – an often indistinguishable duo.
So so much resentment. Some of this is ultra personal and relates to things that have happened in my life – namely the break up of a 3 year relationship. This is not the place to give details, but I think it is fair to say that although I am grieving, for personal reasons this grief is often indistinguishable from resentment.

I feel resentment and disappointment that in the middle of January my health declined pretty quickly after I started the antibiotics for fermenting gut. I will write more about this another time – but right now I am struggling with having lost so many opportunities and that this big treatment opportunity has so far just made me ill.

I feel resentment that I have been ill for so long.

I also feel resentment about the way I am having to live my life due to social services and the NHS. My life is more difficult because of this and it is hard not to be angry, and bitter, especially when social services are doing all they can to ignore me. I’m still waiting for a response to a 14 week old complaint (response time should be ten working days)

I am hopeful still, but I find this has its own problems. How much is it reasonable to hope for? By continuing to hold on to this hope I simply cannot accept my life as it is – and emotionally that is really hard. I find it hard to just enjoy the bits of life I can, when I don’t know how much more is out there for me. after the break up and the issue with the antibiotics I no longer know what I am hoping for either.

The relationship break up and my health decline has turned my world upside down. I do not know what my future holds. When you are in a relationship you can look towards certain milestones like moving in together. When there is a central person in your life it is easier to imagine improvements because I can imagine myself in a restaurant with my partner for example. Suddenly I am having to replace partner with an unknown friend. I know I will have people to share these moments with, but I don’t know who. This has been made worse by the sacrifices I made to make the relationship work. I rarely saw my friends because I didn’t have energy for both, so I made the decision to prioritise my partner – so now I have been having to build up a brand new future on uncertain terms. Meanwhile I’ve not been well enough to see friends all that regularly anyway.

there is also uncertainty about where my health is going. How much more can I get for myself? How can I imagine a future for myself when I don’t know what my health will be like, if my social care will improve etc. I just can’t make any plans.

Fear and internalised guilt
Guilt that I am so ‘well’ and yet not out of bed. Guilt that I am not doing the right things for myself in terms of sleep and rest.

Fear of the unknown. Fear that this is it and fear that it is not. Fear of a change even if that means improvement because that means adjusting (although obviously Id love this) and higher to fall from. Fear that grips my every time I experience symptoms that are worse or reminiscent of worse times. I will write about this more another time…but it is very frightening to be thrown back in to a flashback of how bad things were.

and that is where I am at. Trying to build a life, with my eyes shut and not knowing what tools I’m working with or even whay I’m building. But I’m still trying.

2 year bedboundiversary

(Content warning – short reference to social care abuse)

Today is 2 years of being bedbound. I went to the GP to give a urine sample, came back, got in to bed and have been there since (unlessyou count being dragged in to the spare room to lie on that bed whilt the hospital bed was set up 2 weeks later, or the two times I fell on the floor before hte bed rail- but I don’t think that really counts). I’m utterly heartbroken that I am still here but trying so hard to be positive about how far I have come. Things that have changed:
– I can move more and turn over independently. I still have help during care tasks for energy management but if I need to turn over I almost always can straight away or at worst have to wait only a short while until I can
– Toileting makes me a lot less ill, in fact it usually just fits in to my routine. With the catheter I no longer have to spend hours in a soaked bed waiting for a carer (which was horrible), and I don’t have to wait in a lot of pain in retention either. (You can blame the wet beds largely on social services and their downright abusive cuts/refusal to prioritise me claiming I only needed the toilet 4 times a day)
– I am having a pain flare at the moment but over all it’s a lot better
– I can talk in more than a whisper and for much longer periods
– I can spend more time online.
– I can listen to music And watch things sometimes
– I can tolerate more light and am looking for ways to increase the light in my room further
– I can chat online
– I can use my hands to type, write short letters, and colour in.
– I can always feed myself
– I can eat. In the first few weeks the nausea made me lose weight quite quickly
– I no longer spend all day dry heaving
– My catheter no longer pseudo blocks due to bladder neck spasm
– I am no longer taken over by horrible spasms
– Loud sounds make me jump but they don’t make me feel like my heart is going to stop, beat out of my chest.
– I’m less touch and sound sensitive
– I can sit up half way with a back support for 40 minutes for lunch and at about 20 degrees for much of the time I’m not resting.
– I am no longer terrified about my situation, being left alone and emergencies such as a break in or fire. I think these are genuine things to fear but I am not constantly on edge and having bad dreams about it.
– In the first few weeks I had a horrible burning pain in all of my glands (including my chest) that would burn and feel like they were swelling until they rapidly feel like they had popped and then it would godown again. I haven’t had that in a long time.
– I have not experienced full paralysis in over a year.
– I have less episodes of tachycardia (although more recently)
– I can see people at all/with less payback.
– I have taken part in one music project, written a few poems, and started a blog

– Although managing my care is far from cost neutral, it has a much less  detrimental affect on my health than previously.


There are probably many more but writing this has made me feel a lot better and more positive. There might be ups and downs,but I am moving forward for sure.