EDS awareness month

May is Ehlos Danlos Awareness month and as this is what I have I thought I would share a little of how it affects me.

First of all I should say there are multiple types of EDS and I have Hypermobility type. I am not going to go into the other ones, you can read about them here.

It has never really caused a problem for me until a few years ago. I have always been clumsy and healed poorly and my hip has dislocated quite a few times in my life. I am lucky that I don’t have daily dislocation issues, although I am sure that many of my joints sublux (partly come out of the socket) daily.

The biggest problem for me is fatigue and my legs just not working properly sometimes – hence why I use a wheelchair sometimes and not others.

Because of my fatigue I have to be very careful in scheduling my diary. If I have to go to London for a meeting I have to make sure there is nothing in my diary the next day as I might be too exhausted to do anything. Last week I had to go to Yorkshire for work, so I broke it up over two days but the stress of driving, combined with the excitment of the work I was doing (making a film – exciting!) meant that I spent most of Friday, Saturday and Sunday resting.

I have had to leave a job that I loved and turn down work that I enjoy. I have to be able to control my diary and I can do that as a freelancer, but I do a lot less work than I used to, which is upsetting as I love the work that I do. I can no longer do event management as the stress in the run up to it and the work itself has a very negative effect.

Stress now causes me pain and fatigue, sometimes it can be immediate in the case of if something happens, but if I am working on a stressful project then it slowly chips away at me and wears me down.

My fatigue is a lot better than it was at the end of last year and that is because I have learnt how to manage it and the constant pain that comes along with this. I went on a NHS pain management course and although I begrudged it a lot it has made a difference and the skills that I have learnt have really helped.

I used to be training for triathlons, ran a half marathon, did outdoor swims, ran and generally did a lot of physical training. I was an adrenaline junkie and no mistake – I used to commute across London on both a cycle and a motorbike. I also did a huge amount, I never saw my friends as I was so busy and people used to say ‘I don’t know how you do as much as you do, you must be cloned’ and I took a great deal of pride in that.

Now I am so grateful that I can walk my dog in the woods for 40 mins a day, although that requires a lot of sitting down as I go and even more on a bad day. I swim most days and I do my physio exercises each day. These are a priority for me to stay well. If I don’t do this then my physical health very quickly deteriorates and I end up totally exhuasted.

Another effect of this illness is we injure easily, lose conditioning very easily and then take much longer than normal to build back up to where we were. It is deeply frustrating, and so is the fact that when you are training for competitions you push past where you are tired. If anything training until you are on the point of throwing up is a sign of a good workout. I can’t do that anymore otherwise I would be utterly exhausted each day. Now I have to stop exercising before I am tired, which is incredibly hard to judge and very hard for me to accept.

I think that has been the hardest thing for me, the complete and utter rewriting of my personality. I used to be a high achiever, really driven and focused. I would be up for any challenge and always be saying yes to everything. I would be working on two festivals at once and still triathlon training and going out and everything else. I was an utter stress head and I would have said I thrived on it, although I am not entirely sure that really I did. I took pride in being a workaholic.

Now I have to stay calm as getting stressed has a negative physial impact on me that is noticable in an big increase in pain and fatigue. Now I have to exercise at a gentle level, keeping it up even when I don’t want to do it but stopping before I get tired. But doing it regardless of how much pain or fatigue I am in. It is a difficult balance and one that I am not sure that I always get right but I keep trying.

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