It’s a bit paradoxical really, certainly frustrating and even wearing, but the weirdest thing about my health is also the one of the most fundamental aspects. It is the most obvious part to me, which I have to work around every day but it is very the part that most other people cannot get their heads around.
Even the disability benefit forms don’t allow for it, even though it affects so many disabled people who are chronically sick. The new Atos benefit assessments are just tickboxes for ‘yes’ or ‘no’, and as such blatantly ignore most of the chronically ill population as they leave nowhere in the assessment for the crucial information to be logged.
Yes, the weirdest thing about my condition is the variability.
I have spent many years doing physio’ every day to try to retrain my ANS from flipping out at activity levels. I have built up what I can do, but am still restricted beyond that. However, just because I have two periods of physio’ per day where I get my body to move and use the time to get things done, it does not mean that I can necessarily do that every day. And I certainly can’t do it outside of the physio’ time as I am forced to spends hours recovering.
When I manage to be up and about, I don’t necessarily know just which activities I am capable of that day. If I want to do something more I have to plan it waaaay in advance with lots of resting for days, or even weeks beforehand. And days/weeks of minimal activity set aside afterwards for recovery, too.
Some days, just getting washed, dressed, fed and washing a few dishes is all I can do. I get extra pleased on less near-fainty days when I can cope with the up and down motions of something like hanging the washing out. The simple things please me these days! And after a physio’ my body always has to rest for several hours.
The trouble is that resting isn’t as straight forward as it sounds, either.
Resting involves having to have my legs up to help them to recover from the activity and to avoid the CRPS pain flaring too much. Pain is what I live with all the time of course, and yet you won’t see it on my face when I’m physio’-ing my way through tasks. I’m really good at hiding pain. I have to be, people get uncomfortable if they can see my pain levels, so I am as cheery as I know how. I had yeeeaaars of practice at it! Besides, it’s blummin’ good to be able to get up and do something useful for a change! But the pain is always there, and towards the end of a physio’ it starts to get meaner, then after my physio’ it explores even higher pain levels.
I also have to rest somewhere really comfortable or the CRPS pain in my hip will go through the roof.
And I always have to have warm clothes on and a blanket to keep my leg muscles from tensing or the pain levels will soar even more.
I nearly always have a hot water bottle (covered, of course) for the same reasons.
If I cannot put my legs up, if I am not comfortable, or cannot get warm, then the pain levels will just continue to rise.
At home I can fulfill these requirements and function a little better. But what do I do whilst I am stuck on the sofa trying to get the pain levels down?
This is where I tried to get my body used to sitting. But even with a medical legrest, individually tailored ergonomic and memory foam covered chair, ergonomic moveable arm-rests, a pillow over the footrest, a pillow on the chair, a hot water bottle and a blanket…. I *still* can’t sit here for longer than 30 mins on a good day, and 0 mins on other days. 
If the pain isn’t too bad I could read for a while, but pain combined with the neurological issues means that I can’t always understand words properly so I often cannot read. Or if I do read, it tends to be familiar and easy reading. Writing has similar problems. But I try to do a bit of both at different times to keep my brain ticking over without draining it of it’s crucial neurotransmitter resources. Which get used up really quickly, by the way… I lose my brain because when we are chronically sick we make so many small but tough decisions throughout the day about things we would have once done/decided/considered without even noticing, (can I get to the toilet or will the pain flare if I try to get up yet? Is it better to get up to get some fluids and suffer worsening near-faint problems, or will it calm down if I just lie down for a while longer? Oh no, the postman’s at the door, can I get there in time and how many hours will answering the door set me back with my pain and recovery? And so on). So our decision-making and comprehension chemicals get used up on the mundane, leaving our brains in a pretty useless state fairly quickly.
As I suffer from various autonomic issues as well, (part of the CRPS), I don’t ‘just’ have the complications of pain variability. Having to pace how much and how often I use my brain sounds hilariously ridiculous to me, and yet I have to swallow my pride and put up with the reality. Think a bit, rest brain for several hours. Same as with how I can use my legs. And now the CRPS has spread through my body I have trouble using my arms too much as well. *sigh*
The near-fainting is another spanner in the works. When it’s bad, it’s bad. That’s just the way it is. I drink fluids (to top up my blood volume), pace myself (to keep things on a more even keel), keep as calm as possible (to reduce the effect of the ‘fight or flight’ kicking in as that raises my heart rate and drops my blood pressure), I have a little more sodium than the average person (to keep more fluid in my veins), but as my near-fainting is not purely vascular the fluids and salt can only do so much, and it’s tricky trying to keep faulty nervous systems under control when they are not processes we usually have much control over anyway. Keeping calm, moving slowly, lying down etc are the kind of things I can do. But still, when it’s bad, it’s bad. And when it’s bad, my day stops where it is and the horizontal becomes my new position of the day.
Only I can’t stay in one position for long, of course, coz it’ll set off the pain levels. Frustrating, much?!
Everything is related to everything else. Our various body processes are inter-related. They interact with, and affect, each other. A holistic view is the only way to go with a condition like mine.
But ask me if I can touch my toes, the answer is not ‘yes’ or ‘no’, it is ‘sometimes’. This is because I am very flexible (hypermobility issues are common with my patient group) but although I can touch my toes, it might render me on the verge of passing out and throwing up for the rest of the day. This can sometimes happen even if I touch my toes whilst sitting on the floor with my legs out, too.
Ask me if I can walk (or mobilise as they say in the official assessments) for however many meters, my answer is ‘sometimes’, because during a physio’ period I may well do so. On a good day I may look as if I’m able-bodied during my physio’ time only, and if I achieve that I am chuffed because that is a good physio’, it’s exactly what I should be trying to do, but in between physio’s I am rendered immobile and in high pain levels and can’t get up for long periods of time owing to a) existing pain levels, and b) the fact that if I get up too soon the pain levels will rocket and take much longer to calm down again. The way my condition works means that I have to stay put.
Despite having to rest for so long, ask me if I can sit for any length of time and the answer is strangely ‘no’… unless it is a soft comfy sofa or bed, with no draughts, a blanket, a regularly topped up hot water bottle, and a few options for position changes. Anything else and my pain will start an upward rise in flare levels and I will end up incomprehensible with pain.
Ask me if I can understand words, whether written or spoken, and my answer is ‘kinda’. Despite my neurological issues I still have the same level of intelligence, I am even trying to complete the final module in my masters that I’ve waited years to do, and it got to a ‘now or never’ stage But try studying when your brain is never clear any more, when if you type as little as a blog post for a few days in a row your brain just stops comprehending words. Ask me about something really familiar but very complex, like my health condition, and I can usually handle it. It makes me seem oh-so capable. Familiar information that I work with all the time is much much easier to comprehend, although when my brain stops working I can’t do that either. But ask me something I’m not expecting, that my brain has to think about and consider before responding, and you might witness a strained thinking expression on my face, sometimes I will look confused because I don’t always understand first time, and sometimes I will be fighting back the distress at realising that I just don’t understand things like I used to. I don’t function like I used to.
Variability. Built in to every aspect of my very complex conditions. And yet the one thing that most people cannot comprehend….
How can I be walking with Magic Dude looking ‘normal’ and yet then have to rest for hours afterwards because the pain will flare severely otherwise? How can I be studying at post-graduate level when my brain is so faulty these days? Or discuss the complexities of a specialist condition when I struggle to understand what the dentist’s receptionist is saying to me? And how can I be so calm and strong through living with these conditions when I come close to passing out if I realise I’ve doubled booked a friend visiting for a cup of tea with a hospital appointment?
It all makes perfect sense to those of us who live with such conditions because we have had to learn about the mechanisms that cause the problems to try to function the best we can around them. That is why I physio’ each day, because activity is as important as rest in working around my conditions which are just not controllable.
But to others it sounds paradoxical. It does not seem to make sense. Even medical practitioners do not always fully understand it. But then again, let’s face it, even the tertiary level specialists in pain and dysautonomia do not claim to fully understand these conditions which are still coming to light through ongoing research.
So you ask me if you can pop round for tea, and I will ask you exactly which day and what time, and then I will say yes or no. What you won’t hear me say is aaaaall of the working out I’ve got to do in my head about how I can factor that into my day without making the pain flare, or the near-fainting worse, and so on. There are a zillion and one factors to every moment of every day that relates to how I can function during every other moment of that same day, and the next few days, the next few weeks, even.
Everything has to be planned; and yet nothing can be planned…. because you don’t know what state your body will be in each day. The best you can do is to constantly assess where your body is ‘at’ throughout the day and try to respond. Flexibility is the key to survival, and yet so is regimented body physio’s and brain activity down-time. Paradoxical to the last.
Variability is the one thing that others often don’t understand, and it is a massively important aspect left out of disability assessments. Patients with variable diseases often fall through the health and benefits safety nets, because the concept of ‘can you do this.. yes or no?’ Just doesn’t factor in our lives. “Sometimes” is all we can say without going into a long and complicated explanation!
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14. Use my 2nd physio to drive to a store where I can park right outside to get the dissertation copies bound
So don’t ever think I will be less interested to hear from you, you are all part of what has kept me blogging and I value input and natter from all of you, xx
