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.

Its all in the genes….

I wanted to update my blog yesterday but I was so spaced out from starting the slow release morphine that I slept most of the day! I have a hazy recollection of speaking to my GP in the afternoon, he rang to check I was OK on the morphine. All I could do was giggle and yawn, so I guess I sounded OK. Unfortunately the morphine is making me constipated…… I know too much information! So he has prescribed me some laxatives. I can’t do prunes or prune juice before anybody suggests that my body will not tolerate them and I don’t leave the bathroom for about 4 hours!

The morphine has worked wonders for my pain its now a 2/10 rather than being 8/10. I can cope with a small amount of pain. Today I’ve had my friend Amanda around  and I was actually with it! I still look pretty ill, quite pale and pasty but no pain.

So why was I desperate to post yesterday?

 It looks like its all in the genes for my sister and I. My sister and I got diagnosed the same day in two separate cities last month with Ehler-Danlos Syndrome Type 3 – Hypermobility. Yesterday my sister had her tilt table test. I made sure I gave her as much information as possible so she knew what to expect. As I chatted to her on the phone yesterday morning before her test she was very blase about it all. In fact she was confident that she didn’t have POTS, it was all a bit of a fuss about nothing.

Later that afternoon I had a text message from her confirming that she did indeed have POTS. She had almost fainted after they gave her the GTN spray up her nose. The GTN spray is the same medication angina patients use to open up all their veins and arteries – its a vaso dilator. Luckily they tipped the table back down again as she slumped forward. She was tested by the same team that treats me so they knew she was my sister. They talked her through her results, her heart rate had started at 80 beats per minute supine (lying down) on the full head up tilt (simulating standing) her heart rate increased to 162 beats per minute and she began to hyperventilate.

 Its an automatic response for people with POTS to hyperventilate when standing as our body is desperately trying to get our blood to circulate around our systems. We hyperventilate to prevent fainting. I noticed it when I had my tilt table test and managed to concentrate on my breathing to slow it down. At the time I was terrified that they would accuse me of inducing a faint by hyperventilating such is my mistrust of the medical profession. However since then I have learnt its a natural POTS response.

The team testing her stepped in and got her to concentrate on her breathing and bring it back to as near normal as she could manage. They were very good with her as they had been with me, even though I tried to puke on them! They talked through her results in a lot more detail than I ever got – yes I am jealous, I’m still waiting for a copy of my report! All I know is that my heart rate went above 150 beats per minute on standing but I have no idea what my supine heart rate was.

So we have both now  been diagnosed with EDS 3 and POTS it looks like its in our genes. Its not unheard of for siblings to have both, indeed I know a local family where everyone in the family has it to varying degrees. Its just taken 37 years for my diagnosis and 35 for my sisters.

The question is now for my sister does she have ME as well? We have been told for over twenty years that she has ME. Is it really that she has had POTS and EDS all this time? I know a lot of autonomic nervous system issues also occur in ME, it is a bit of a grey area. Although how POTS and EDS patients are treated by the medical profession isn’t great, (due to ignorance about the conditions) its a damn site better than the way they treat patients with ME.

This latest development has sent my parents into a frenzy to try and find out as much medical information about their families as possible. It isn’t that they are looking for someone to blame or which side its come from they are purely are looking for the genetic connection.