Where is my health/what is it doing at the moment?

It’s improving. That’s the big thing, and while I explore all sides of my health (in an ME sense) in this post, please
understand my immense gratitude for that. Please also see the paragraph on privilege further down. 

I am doing things I have dreamt of for years, that in the moments of laying still in the dark and suffering so hugely, I desperately hoped I’d be able to do one day. And honestly, it’s hard to believe it’s happening. 

I am still in bed almost all of the time. I still have to do all toileting in bed. But with the help of lots of specialist equipment, I can hoist from bed to the shower, where I lay flat, and a carer showers me (meaning the whole process is flat). Many of my washes are still strip washes in bed though but often due to other factors as a shower in this way doesn’t really use much more energy. The amount of time I sit in my wheelchair fluctuates, as it always causes some form of PEM so it has to be done in a week that is otherwise mostly empty. I need to rest before and have space in the diary to crash after. So sometimes I don’t sit in it for months, sometimes I sit in it 3 times a month for many hours. I still sit in it reclined but I am closer to upright than I used to be, maybe even close to a 60-degree angle. But sitting in the wheelchair in particular has huge consequences for me lasting several days which leaves me not functioning to the same level or able to do as much as usual in bed. The classic increase in symptoms and a decrease in functionality. The positive is, though, that this increase in symptoms and PEM generally is not as severe as things used to be. 

 

Many (mostly non-sick people) measure improvement just by time out of bed but it’s not just those out-of-bed things but life in bed that matters so much as well. My quality of life is so much better than it used to be. I can sit propped up by my bed at a reclined angle for almost all of my waking hours. I can have the blinds open and in the evening my lights are set to 15% which is huge. At one point I wore sunglasses even with the blinds closed and if I had light it was one single lamp as dim as possible. I’m able to spend many hours each day crafting, occasionally watch a bit of TV (every couple of weeks normally as it does increase symptoms), and scroll as much as I want on social media generally. My symptoms are managed so much better by (many) medications. I struggle more with cognitive activities but less than I used to. I write most of my own emails and do some of my admin now. I still struggle with things like reading, audiobooks don’t work for me and like I said I don’t watch TV often. Many people I know can watch TV or listen to audiobooks but not craft and that shows just how different things can be for people. For me, it generally uses much less cognitive ability to craft than those other things. 

Something I need to address in this is privilege. I have been kept alive by carers, whilst it didn't change my ME level as I physically couldn’t and can’t do the things they do for me it does literally keep me alive. I make a distinction on that as I know some people need care to stop worsening because ME wise their body doesn’t tolerate making food or getting to the kitchen but they have to push to try - I couldn’t have pushed to try I physically was unable to walk or move to get to the kitchen for food etc. I have been supported by my family financially. I have received benefits and received support from family in applying for those benefits as it’s not something I was well enough to do. These things have allowed me to access private healthcare that has given me many medications which have drastically improved my quality of life. These medications aren’t necessarily to treat whole illnesses but reduce symptoms of them which improves my quality of life. And then it’s even a privilege I can tolerate these medications as many can’t due to things like MCAS and medication sensitivities. Private healthcare has given me helpful advice and saved me from horrific treatment by medical professionals that continued to make me progress in severity for years. 

And luck. That’s the other big thing. People can do everything I’ve done, even have not been made worse by harmful treatment, and still not improve. 

Something else to mention is the risk of worsening. It’s something I have to consider, regardless of if I want to or if it’s negative, to try and prevent it. This could be from trying to do things, I am at a point where to see my improvement I need to take some risks where I have no clue if they’ll crash me and no clue if the crashes will compound to lower my baseline more permanently. It’s also not just my choices that put me at risk but my other health conditions. I have been in and out of the hospital since August due to gastroparesis and being reliant on an NJ tube which constantly fails. Every time it causes severe symptoms with a lasting effect. Not only due to the environment of the hospital but also dehydration and going cold turkey on almost every single medication. It’s terrifying that it’s not even in my control. 

I think the thing that really sums up the improvement is that when I am doing these things I dreamt of, like going to the garden centre a couple of weeks ago, the impact and PEM from that is less severe than my baseline was a few years ago without having done anything. 

I am extremely grateful for these changes and improvements in my health and I hope I can be lucky enough to have more, and that I can prevent worsening, I hope this for everyone with ME and other chronic illnesses but change is needed systematically for that. 

This life is like a tightrope higher than you can imagine...

How can we walk across it and balance all that we need to? Physically, mentally, medical treatment, trying to live and do what we can, and family-wise. 

How do we balance doing anything vs PEM? Activity levels and resting (or being completely unable to do any activity) vs muscle loss from lack of movement. Medication to relieve symptoms vs side effects. Illness vs its comorbidities.  

It feels impossible and there is such a long fall. That is ME (and many other illnesses). 

We all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

I am really struggling at the moment to balance the different aspects of my life. 

This isn't something new but it's really getting to me at the moment that I truly can't win. 

My illnesses all need different management that all contradict each other.  How do I prioritise which of these debilitating things to try and help?  “if you don't use it, you lose it” but if I try to use my muscles I lose the little functioning I have. I've had to accept knowing I'm losing it. 

How do I balance my mental health vs my physical health? And it isn’t as simple as just letting one of them win. Leaving my mental health to suffer also affects my physical health as emotions are physically draining. But neglecting my physical health and doing too much leaves me in a worse of mental state. 

Being bedbound has negative effects on so many areas of physical health but there’s no choice about it. 

POTS can sometimes be helped by movement, subluxing joints need stronger muscles to support them, and the longer I lay in bed the more it happens, but I'm not physically well enough for physio. 

Gastroparesis isn't going to be helped by eating my meals at a reclined angle and being immobile but again there's no choice. I'm unable to even try to move around. 

The need for medical appointments vs the crash they bring. 

Sometimes it's the classic 'given an inch, takes a mile'. Not deliberately but because we have to. 

We make all make mistakes in life. Some big, some small, it’s how we learn. But no matter how many catastrophic mistakes I make with ME and pacing I can’t seem to learn much because I remain in the same impossible situation. Walking the same tightrope with the ability to tumble further than I could ever imagine. 

When improvements happen at snails pace and deterioration can happen in an instant…

It’s like watching in the third person as life snowballs and the symptoms build. The months and years of self-management, pacing and trying desperately to improve, the small increments it took, crumble as life slips away. 

Recovery, and illness, are not linear. A statement said time and time again but that does not ease the pain it causes. It’s a winding road with many twists and turns in the path ahead, and many plateaus and long-winded bits, but also those already conquered. We can forget how far we have come. Because you can come such a long way and still have a huge climb ahead of you. But it isn’t just the climbs… it’s the falls. The little trips or straight falling off the edge of the cliff.  

Some are lucky and don’t have that and make regular improvements, likely very slowly, or in some cases remission even if it can take years. Some people only deteriorate on their downhill path as it slowly happens, their progressive illness overtakes them, and some people climb the mountain only to drop off the edge of it.

@diaryofachronie_ did a fantastic post recently about the heartbreak of deterioration. The internal conflicts. The grieving, torment, wondering, dreaming, hoping and soul destruction. And it really is soul-destroying. 

It may happen slowly over time, but many times it can be triggered truly in an instant. How it can continuously happen quicker than we can keep up with or process. 

I get both, two years of gradual decline and in the last year the big ones I didn’t recover from were mostly viruses.

There are times I took a chance for joy and it bit back. Or got too excited with possible activity levels and bit off more than I could chew. Those times I could blame myself. But it’s the cruelty of the illness. 

All after it took so long to get anywhere with pacing.

Living with low quality of life is incredibly hard. There is a lot to grieve and wish for. Then simultaneously either declining or desperately trying to hold onto the last of our quality of life. The balance of trying to avoid deterioration is terrifying. Wondering how soon you will be doing those activities again whilst also knowing you may be doing even less eventually. Watching your remaining quality slip away is horrifying. I’ve felt frozen in time watching it happen. Wondering how far it will go before it stops. One after another it’s overwhelming and all-consuming. No time to catch up and accept. 

Constantly trying to adjust to new limits, sometimes the deterioration happens before we can even process it. Hit when coming up for air. 

We are pushed by health professionals, family and friends, told to take all sorts of risks and given suggestions of harmful therapies. And then scorned for not doing what they want and blamed for getting worse when we follow their advice or are forced into it.

Living this life and deteriorating is hard beyond belief to cope with.  And when there's nothing you can do other than try and float to stay above the surface of the crashing waves, the water that takes every attempt to drown us - we survive, in the face of it all.

It's not just what you "can" do its what you should do, what you need to do survive or have quality of life

It's not a black or white you can or can’t do something situation with chronic illness and disability. It has a grey area (like most things but people seem to forget that about this). We know not everything that is possible to do should be done, you can commit a crime but you shouldn’t. You can choose to do something highly dangerous, but should you? 

With chronic illness and disability, there is a lot we can’t physically do. Then there is the stuff we could push to do that would be incredibly harmful for us. So “should you do this?” “is it okay for your health to do this?” would be a far more appropriate question than “can you do it?“ or the accusatory “but you could do it?”  Instead, we are often jumped at for not doing things we in some way possibly could.

The reality is not doing an activity with a harmful effect is what allows us to do another activity. What allows quality of life. And other people should remember that nothing happens in isolation. Having to give up every other activity, to do one thing, is not sustainable. We have to prioritise the things we want to do as they can’t all be done, which means not doing certain things.

There are things I can’t do at all, things I can, and things that trying causes devastating harm, things I may occasionally push for despite knowing it’s irresponsible, and I suffer big time but on occasion may be worth it. I can’t stand at all (and yes I have been pushed to try, I won’t go into the trauma, I definitely can’t stand), I could physically be hoisted out of bed each day, it would be horrible and leave me physically unable to do anything else because doing it once does that and I lose my quality of life.

It’s not negative to say no to doing things to protect your health. You don’t have to “test” the harm it does repeatedly, or ever. You know your body and that’s what should be trusted.

What I choose to do should never be questioned by someone else. Never be suggested I’m not trying hard enough because I’m choosing to respect my body’s needs and instead choosing other activities. Or that because I may choose something that brings some joy instead of something someone else wants it to be, sees it as me “wasting” my energy. ‬  My choice is to do everything I can to not get worse so that I don’t end up with more things added to my physically impossible list. A choice of survival. 

What I choose to do should never be questioned by someone else. Never be suggested I’m not trying hard enough because I’m choosing to respect my body’s needs and instead choosing other activities. Or that because I may choose something that brings some joy instead of something someone else wants it to be, sees it as me “wasting” my energy. ‬  My choice is to do everything I can to not get worse so that I don’t end up with more things added to my physically impossible list. A choice of survival.