A difference of opinion

I read a blog earlier in the week that really annoyed and upset me.Which I actually think was the intention of the blogger, it wasn’t aimed directly at me (I hope) but the wider POTS and EDS community. The blogger had chosen to post her opinion on what people with EDS and POTS should do to get well. What her post failed to understand was that  illness is not black and white, its not one size fits all and what works well for some people may not work so well for others.

What annoyed me more was the bragging on Twitter that she would get hate mail for posting this. I checked her blog this morning and it seems no one has bothered! Why would you try and reason with someone who is telling you in her post that you aren’t sick and you need to change your attitude?

Her reasoning is that it is that EDS is a genetic abnormality so that means we aren’t sick. Perhaps I should suggest that to parents with children with Fragile X syndrome that their kids aren’t sick? Or perhaps mention to my cousin who has cystic fibrosis another genetic condition that she isn’t sick either? The author of the post has very strange reasoning. Which is why her post has upset many people in both the EDS and POTS community.

If I didn’t feel like death warmed up, need morphine to cope with my hip and back pain, need a wheelchair to get around outside or use a walking frame around the house, I wouldn’t be stuck at home blogging I would still be working. Her post made it seem like it was a life style choice. I can assure you its not.

The basis of the post was that we should exercise to condition and strengthen our muscles. If we can’t get out of bed we should exercise in bed lifting cans of beans as weights. We should push through the pain and just get on with it. It seems to me that this person is seriously ill informed about this condition. Either that or she is at the very mildest end of the spectrum and hasn’t experinced dislocating her shoulder just by rolling over in bed.

Due to our crappy collagen we injure much more easily than “normal” people. Unsupervised exercise or exercise routines that have not been devised by a health professional such as a physio that has knowledge of connective tissue disorders should not be undertaken by people with EDS. Due to the fact that they can do much more damage than good.

Our village hospital physio department is not allowed to treat patients with connective tissue disorders for just this reason. All EDS patients or patients with other connective tissue disorders have to be treated at the City hospital. More damage was being done to these patients because the people treating them didn’t understand the condition.

When I was walking more than 20 miles a week and doing aerobic exercise videos I still slipped discs in my back and dislocated my knees more times than I would care to mention. Exercise can make the joints stronger but it can’t make up for the fact that the glue that holds my joints together doesn’t work.

 I am aware of the fact that my body has become deconditioned and I need to strengthen it. However I am also aware of the fact that just rolling over in bed at the moment can send me into tachycardia (a heart rate over 100 beats per minute). My POTS consultant has labled my condition as unstable as its not responding to increased fluid and salt or with the steroid florinef. He is very unhappy at the prospect of me commencing physio with it not being controlled.

I would love the author of the post  to try that exercise line on my internet chum Minxy who has EDS. Her EDS has given her such bad gastroparesis (a paralysed stomach) that she is again looking at being hospitalised to have a feeding tube placed into her stomach as she has lost so much weight. Apparently she’s not sick and just needs to lift a few cans of beans to get well. I hope you are reading this Minxy, so you know how to get better. I’d also like her to have a chat with my Dutch friend who can not transfer herself from her bed to a wheel chair without dislocating her wrists. Perhaps she should start lifting some cans of beans to improve her condition too?

I’m mad! Can you tell? Its just sheer ignorance about the condition that would allow someone to make such sweeping statements.

Why deliberately try to upset people? Why not be a little more understanding and appreciative of the differences between people? Why not try to understand that EDS is a wide ranging spectrum of a disorder?

I’m really pleased that this person has found a way to keep herself strong and healthy. I was glad to see that she was trying to publicise EDS and dysautonomia, what I didn’t appreciate was the attitude towards others who are more severly afflicted with the conditions than she is.

Some people with EDS have very few symptoms other people are very badly affected. The condition is a syndrome – meaning it has a wide ranging number of symptoms that not everyone will have. Also POTS is a syndrome meaning it has a wide ranging number of symptoms. How I may feel and how others may feel with it will differ considerably. What  is agreed upon by the medical professionals is that both conditions can leave patients feeling severly fatigued. Its suggested by some that a POTS patient uses as much as five times as much energy as a “normal” person standing up. EDS patients use 3 times as much energy as a “normal” individual just moving around and keeping their bodies together.

What disappointed me most about the post was that at no point did it suggest that someone who has POTS or EDS seek the advice of a trained professional before embarking on a programme of exercise. Be that professional a Dr or a physio.

Some EDS patients who aren’t affected severely by the condition have very little understanding of what its like to live at the other end of the spectrum. They say we are all doom and gloom in our blogs and there are never any success stories out there.

 I beg to differ I am a success story, I was written off by numerous Dr’s as having a mental health issue. I have fought and fought hard for four years to get a name for my conditions and start getting treatment. This is just the beginning of my journey.

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8 thoughts on “A difference of opinion

  1. Very well said Rach! So proud of you for sticking up for us all!
    But it is sad that you have had to stand up against a fellow EDSer, who should know better than anyone the challenges we face!

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  2. Hi Minx,

    Its a sad day when we are drawn into arguments with other EDSer's but the blog post was so ill informed I couldn't let it go.

    I had been mulling it over in my head for several days before I acted, as I hate Internet fighting!

    Thanks for your support

    Rach xx

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  3. There are so many illness's that don't have a cookie cutter stamp to them. EDS, POTS, MG all affect people differently. That's also what makes it difficult for some to get a diagnosis and good treatment. What works for one person can truly be harmful to another.

    Wishing you continued strength on YOUR journey!

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  4. Hi Rachel,

    Thanks for that, I really appreciate your kind words.

    Its true one persons experience of an illness maybe totally different from another persons. No one should stand in judgement on them.

    Looking forward to the next part of your blog. Its very interesting reading seeing how your journey started.

    Rach xx

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  5. Hi Rachel .. If someone says something that's cracked to me – I don't even read it .. I ignore it and move on ..

    Even though it's something you care about – it's irrelevant because you know the truth.

    People are so opinionated & offer solutions without actually knowing the details or having met the person ..

    Crazy – ignore or vent – as you've done .. I haven't even read your post .. cos that's what I feel –

    I haven't got the energy or the time to deal with things I don't need to .. so I walk away as such.

    The bit that's worth it .. is commenting here and supporting you ..cheers for now .. Hilary

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  6. Hi Rachel .. glad I remember the verb 'to vent'! Otherwise I might have sounded like an old crab .. but you've got better things to worry about – took me a while to adapt myself – I used to fret about the sweaty small stuff that would never help me!

    Now I really do just walk away .. and don't read quite often.

    Enjoy the sun .. hope you've got some down there … have a reasonable weekend .. Hilary

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  7. Hi Hilary,

    We are expecting rain later today so the dogs will have their coats on for walkies!

    Sunday is supposed to be glorious so looking forward to that.

    My parents are up this weekend so thats something else to look forward to!

    Have a good weekend yourself young lady!

    Rach

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