Yesterdays ramblings….

I just cringed looking at yesterdays post – grammatical errors and the like! It seemed to make so much sense to me yesterday when I wrote it. But really I was space cadet number one! Today my head is clearer but I feel lousy. I am completely and utterly exhausted after yesterday.

Some people may think I am a complete fruitcake for saying that I can’t sit upright as it makes me ill, so I thought I would take the time to explain. I can sit upright, but I can’t sit with my feet below my waist – like normal people sit! I have to sit with my legs up out in front of me, so on a recliner or perched on the coffee table or if I can get my dogs to move, on the sofa. Due to my autonomic issues and the probable ehler danlos syndrome if I sit with my legs below my waist my blood pools in my legs, causing my heart stress as it tries to pump the pooling blood back up to the heart and onto my brain. On a bad day the effect of sitting like this can be felt in a few minutes on a good day maybe 5 minutes.

So sitting in a wheel chair for 3-4 hours causes me untold problems. It literally wipes me out for days whilst my body tries to recover from the stress placed on it. I read some where that a person with POTS uses 5 times more energy on standing than a normal healthy person, that our quality of life can be similar to some one suffering from heart failure or COPD.

 Today I have spent the day in bed recovering. My blood pressure has been 80/40 with a pulse of 100 most of the day, vision grey, voice slurred. Yes sitting up does this much damage to me. On a bad day mum can hear it in my voice, she will know before even I do that a particular day will be  a struggle.

Its very difficult to get people to understand what it feels like for me to sit normally, but I will try – I agree it sounds totally wacky and to be honest I would never have believed that sitting down or standing could make you so ill before it happened to me. I would have scoffed at the notion, so I understand the disbelief I face, but believe me it doesn’t take away the frustration.

Not being able to sit or stand has massive ramifications on normal everyday life. It means travelling anywhere in a car causes me to be ill. It means going out for a meal with friends is impossible, family gatherings a no no. Taking a shower a massive adventure will I or wont I faint? Working a nigh on a impossibility – who works – other than the oldest trade in the history of the world – on their back?

So this is what happens – Initially I feel fine, then I start to breathe more heavily as there is less oxygenated blood in my system (its sitting in my legs) my body tries hard to compensate by increasing my breathing. I start to feel unwell – this is really hard to describe, its not unwell like I have a sniffle on the way but an unwell as in my body is trying to tell me something is seriously wrong I have an overwhelming urge to lie down. In a wheel chair this is incredibly difficult I can’t get up and lie down I would be locked up! So I rest my chest on my legs trying to shorten the distance between heart/ brain and feet. It doesn’t always work and you feel quite ridiculous!

 If I can’t put my chest on my legs or lie down I start to see stars (bright flashing lights) in my peripheral vision. My vision will go blurry and start to grey out so that I can see only a tunnel. I then start getting confused as I can not maintain my attention on even a basic conversation. At this point my body is screaming lie down, lie down! My head starts to thump as my brain is no longer receiving enough blood and the oxygen that blood carries. Eventually I become less and less with it. Like yesterday I maybe able to hold off the passing out stage for a while and just feel incredibly disorientated. I hate feeling like that as I feel vulnerable and scared.

The worst thing is that you can be feeling like this and some dear old soul will come up and say “my your looking well….” I will be quite honest there has been may a time I have wanted to beat the crap out of the person that has said this to me. Because the old me never looked like this, compared to how I used to look, I do look ill. Its just over the last few years people have got used to me looking like this.

It isn’t just strangers that will say this to me, but friends who I have known for years. I call them friends but I don’t know if that’s really true. I know that they are sick and tired of me being ill and never getting better that they get fed up with the fact that we never go out anymore. That if they see me it has to be at my house so that I don’t have to travel and know I can sit with my feet up.

 I told one “friend” that I was now on steroid treatment, they seemed to believe that it was a cure and that today I would be better. They were bitterly disappointed when I told them there is no cure at present, just treatments to try and improve my quality of life. They just can’t get their head around it. Whilst their life whizzes off into the future I am here taking baby steps. I don’t begrudge the way their life has turned out, but a little compassion or even to attempt to understand what I go through day by day, hour by hour, minute by minute. Instead of making me feel guilty because I can’t do what we used to, would be nice.

I have tried to explain to them on numerous occasions why I feel so ill and what is going on with my body but I am made to feel like I am making it up. Surely its impossible for someone to feel so ill and there not to be a cure? 

So now I try really hard not to discuss my illness with them, they don’t understand and I don’t need the feigned sympathy which rapidly disappears before they continue to tell me how wonderful they are. This sounds very bitter but go onto any forum where people suffer from chronic debilitating illness and behind closed doors you will see hundreds of posts from people stating the exact same thing.
 I am lucky I have the support of my husband and family and some dear friends. But there are people out there whose families dont even believe they are sick.

These days chronic illness is seen by the media and people that don’t have it as something to be borne with a sunny disposition and positive thinking. Its made people who suffer with chronic illness feel like they can’t say “you know what I feel like a complete pile of shit today” because people don’t want to hear it. You are made to feel guilty if you voice the fact you don’t feel great to the healthy world and made to feel that some how its your fault. Well it isn’t my fault and lets see how you would get on with life the way I live it?

OK so I may sound bitter I am not. I just wanted to express what its like to live in the world with an invisible disability and to make you think just because a person doesn’t look sick, doesn’t mean they aren’t sick.

2 thoughts on “Yesterdays ramblings….

  1. Hi Rachel .. I'd probably have gone off my rocker by now .. and not be as patient as you obviously are, despite the frustrations ..

    Keep going and just look after yourself as you know how, and as you know is best for you ..

    Your posts says it all .. and we need to accept that some people will be in your position .. and life is just very different to the rest of us & a huge struggle medically as well as life in anyway ..

    With thoughts – Hilary


  2. Hi Hilary,

    Your comments are so very kind. Always so thoughtful and touching.

    Hilary if you had a chronic illness that reduced your capacity you would in some aspects go off your rocker, like I have on occasion (sometimes months on end) but eventually you would try and come to terms with the hand you have been dealt.

    You make adaptations to every aspect of your life that become so second nature you dont even realise that you are doing them. You appreciate the little things you achieve and the love and support of family and friends.

    I don't feel that I am at all patient – I feel that sometimes my blog is way too negative and I come across as a raving loony tune! I want to be honest about what its like to live like this the majority of the time flat on your back.

    My blog was just started as a way to let off steam and have a bitch and moan! I never dreamt in a million years people would read it and take time to make comments.

    If I just help one other person who has an unidentified illness find the strength to battle the medical profession to get answers my job is done.

    Thank you for taking the time to comment Hilary, its always appreciated.



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