I spend most of my time these days lying flat. Usually in bed, but sometimes on the sofa. I’ve been trying to keep track over the last few months, so as not to sound melodramatic by underestimating the amount of time I am able to be vaguely ‘functional’ each day. On average, I spend just over 80% of my time in bed.
There are two main reasons for this:
- Autonomic dysfunction
I’ve talked about autonomic dysfunction before, and the effects that it has on my body, so I won’t go into depth about the basic stuff. As a very quick reminder, the autonomic nervous system (ANS) has a role in regulating pretty much all the ‘unconscious’ bodily functions, from heart rate, blood glucose and blood pressure to sweating, and bladder, bowel and sexual functions. I was diagnosed with severe autonomic dysfunction about 4 years ago, though I’ve been symptomatic for decades. It’s very difficult to diagnose autonomic dysfunction, not only because it’s rare, but also because so many different body systems are involved. Going to the GP with symptoms of heart racing and dizziness as a young woman is likely to earn a diagnosis of anxiety and ‘reassurance’ as the ideal treatment. Even if the symptoms are taken as an indication of a physical, rather than psychological, disorder, it can be a struggle to believe that the cardiac symptoms are related to the bladder dysfunction, and that both of those things are related to the dermatology symptoms of abnormal sweating, gastroenterology symptoms of intestinal dysfunction, and so on.
Anyway, I am ‘lucky’ enough to have a firm diagnosis, with “severe autonomic dysfunction” in black and white, on paper, and signed by a consultant neurologist. I carry this around with me, as there are more than enough doctors in A&E departments who don’t believe in things they can’t see, without written ‘proof’ from a specialist!
The most difficult thing for me at the moment is that being upright, whether sitting or standing, requires a lot of work from the autonomic nervous system, in order to maintain blood pressure and heart rate, mostly. My heart rate tends to run at about 110 beats per minute when I’m lying down. When I sit up, this can jump to 150 bpm, and can be even higher if I try to stand. This is uncomfortable, because I can feel the ‘flutter’ of my heart when it races like that. I also get very dizzy, and often black out, or faint completely, as my heart can’t pump efficiently at these very high rates, so my blood pressure drops. Combined with stretchy blood vessels (thanks, Ehlers-Danlos Syndrome) which allow my blood to pool by gravity in whichever part of my body is lowest, it becomes almost impossible to maintain my blood pressure when I’m upright. Everything else (autonomic function-wise) seems to be more difficult when I’m upright, perhaps because my ANS is so busy trying to deal with my blood pressure/heart rate that it can’t cope with anything else. So I really struggle to control my body temperature, with extreme sweating above shoulder level, wild swings in blood sugar levels, nausea, dizziness, etc. The thing that I find most unpleasant (apart from the sweating, which I find intensely embarrassing) is what I can only describe as ‘autonomic storms’ – intense shivering, combined with waves of goosebumps, followed by hot flushes and sweating, and back to shivering.
The shivering has an additional effect, of stressing my already-weak muscles, and pulling my joints out of socket. Yes, my joints are unstable enough that shivering can cause dislocations. Multiple dislocations.
This leads us nicely on to talk about pain.
I don’t like to talk about pain. I don’t like experiencing it, of course, but there’s something almost worse about sharing it. People can understand pain. Almost everyone has experienced pain of some degree, so it’s easier to imagine the pain than some of my other, less common symptoms.
Pain has become a constant companion. It seems normal to shift position because my hip is dislocated, or to check for dislocations before trying to roll over in bed. There are times when my muscles are too weak to hold my joints in place, even just lying in bed. When that happens, I can feel my joints sliding out of place, and all the pain associated with it, but I don’t have the strength to stop the dislocations, or even to move to be able to get the joints back in socket. At times like that, it takes everything I have to be able to reach the pain medications that I need, and even then, I find myself crying out, or even screaming with the pain. I don’t scream easily. I have stitches without local anaesthetic. I have had surgeries without anaesthetic, or even sedation. I have had IV lines tunneled under my skin and cut out without flinching or crying out. The pain of all my joints dislocating is indescribable; trying to breathe shallowly so as not to irritate the dislocated ribs; wanting to change position to get my joints back in place, but not being able to do that because my muscles are too weak; when I do manage to change position, I dislocate a different joint, or joints. This happens not just once, but over and over and over, accompanied by all the autonomic symptoms, nausea, vomiting, dizziness, constant infections. It’s too much to bear.
My life pretty much revolves around medications in general, and pain medications in particular. I can cope without some of my other medications, but pain meds, not so much. It’s much easier to try to keep pain under control than it is to try to get it under control once things have gone haywire. Additionally, pain seems to ‘stress’ everything else, especially the autonomic stuff, so being late with pain meds can lead to autonomic storms, which leads to muscle contractions and joint dislocations and more pain. I try to plan all my activities around pain medications. I’m so grateful to have medications that allow me enough relief from pain to be able to have a conversation with a friend, hold a friend’s baby, play with the children, or just to be able to have a shower and wash my hair.
Having so little ‘upright’ time (four hours a day, on a relatively good day) makes it really hard to socialise, so once again I’m finding myself incredibly isolated, lonely and frustrated. Those four hours are not just free for doing fun things. Having a shower takes about an hour, and requires at least an hour lying flat afterwards, leaving three ‘upright’ hours. Getting dressed and putting on make-up is another half hour, followed by more lying down, leaving two and a half ‘upright’ hours. Travelling requires extra pain and nausea medications, and reduces the time I can be upright – if it takes half an hour to get somewhere, and half an hour to get back, that’s another ‘upright’ hour gone, plus a reduction in ‘upright’ time of maybe another half an hour, or even an hour, leaving only half an hour of ‘upright’ time. All that effort, planning, getting up early so I have time to get ready and do lots of lying down, planning/preparing/administering extra medications to deal with the extra symptoms associated with being upright and getting ready to go out.
All that effort for half an hour with friends.
And then there’s the payback. Hours, or even days of having to lie flat in bed, needing extra medications, struggling with extra symptoms. Payback days mean that nothing gets done. All the chores get pushed back to another day, when I’m feeling well. For half an hour with friends, there’s all the preparation, there’s the payback, and then the days spent trying to catch up with all the chores that didn’t get done because I wasn’t well enough to do them.
At most, I am able to go out twice a week. That includes medical appointments.
There have been several times this week when I’ve wondered if anyone, other than my husband, would notice if I just disappeared. I feel as though my mark on this world is getting lighter and weaker, and my ability to leave any kind of legacy is getting less and less every day. I still have things that I want to give, things that I want to say, but I’m fighting against a body that just wants to stay still, and seems happy to fade into oblivion.
I’m not happy to fade into oblivion.
I’m trying to use my good hours/minutes to reach out to those that I love. Please understand that I want to be there for you, with you. I want to be involved in your life, to be supportive, to share the good times and the bad times with you. I long to break free of this body, but unfortunately, the only way to do that is to shuffle off this mortal coil, which doesn’t get the results I want. My mind is still active, and I think about all of you so much. I wish that I could show you how much I think about you, how much I care about you, and how much I wish I could be with you.
After months of hoping that this wouldn’t be my new normal, I’m now trying to come to terms with the fact that it is, and trying to find new ways to be in touch with you. I may need to start hosting pyjama parties!