Thursday, 24 May 2012

Ehlers-Danlos Awareness Month

This month is Ehlers-Danlos (EDS) Awareness Month.  I was diagnosed with the hypermobility type of EDS in 2009. EDS is a connective tissue disorder it can affect many systems including the gastro-intestinal and autonomic systems.  I am currently awaiting testing for postural orthostatic tachycardia syndrome (POTS) which is a form of autonomic dysfunction.  EDS can cause widespread chronic pain and fatigue, but to most people you wouldn't realise it because it is a hidden disability and unless we happen to be using crutches, a wheelchair or other aids it is not noticeable to the average person this can lead to people being wrongly accused of making it up to gain access to strong painkillers.

A lot of doctors do not know about EDS and have not learned much about it since leaving medical school this means that a lot of people go undiagnosed for a very long time.  I myself started to get dislocations at an early age but wasn't diagnosed until I was 25.  This seems to be a common theme among EDS patients who according to the poll on the HMSA website 53% didn't get diagnosed until 10+ years after the start of symptoms.  Many have gone through several diagnoses before seeing someone who was knowledgeable in the condition.  There are very few clinics in the UK that specialise in hypermobility syndromes and the ones that are available are incredibly over subscribed.

My hope for the future is that more doctors learn about EDS and that less people have to go through the long journey to getting diagnosed.  The two charities HMSA and EDS-UK are doing great work to increase awareness of these conditions.  I am incredibly grateful to the HMSA and my friend Lisa as without their advice and guidance I would not have got the diagnosis and possibly would have had many more years trying to figure out what was wrong with me.  This years HMSA conference theme this year is "Moving Forward and Staying Positive"  so hopefully there will be a lot of positive information coming out of the conference this year.

State of me nearly 3 months post Stanmore

I thought I would take the time to update everyone on my progress since leaving Stanmore almost 3 months ago.  I have my 3 month follow up appointment and there are a few things that I need to rectify before that appointment.  I have to say that the last few months have been rather tough health wise so I haven't done as well as I would have liked to.

The first few weeks following Stanmore all I wanted to do was sleep.  Being ill with a glandular fever type illness didn't help matters.  I have found it very difficult to integrate what I had learned at Stanmore into my life here at home, it is not out of lack of motivation, somehow I find myself over focusing on other things and forgetting to do important things such as take medicines, eat and go to bed at reasonable times let alone all the extra things I need to do such as physio and exercise.  I need something/someone to prompt me gently to do these things otherwise they will not get done.

This year I have regained the weight I had lost over the last few months of last year which I am disappointed about but not surprised.  To have my lower surgery and the last part of my chest surgery I need to get my act together and get down to 12st and I'm currently just under 15st so I have a long way to go with that, the shame is that I actually got rather close to that goal weight but let it all slip away.  But this post isn't going to be a pity party, it is to clear my thoughts and figure out how to proceed.

My goals on my target sheet are as follows:

- Create a daily routine - This is something that I am really lacking in now that I don't go to the university anymore. I have no structure to my day and no reason to get up in the morning.  I wish I were able to work but I just am not able to right now, but that doesn't give me an excuse to stay up late and lose half the day because I didn't get up until nearly midday.  My expected level is to set up a computer programme and set up a timetable so this one will be achievable before I go back so that is now on my to-do list.

- Eat breakfast - Something that I do remember to do on the days that I'm up in time for breakfast so if I get my sleeping times in order then this should fall in line pretty simply.  It is usually lunch that I forget, I should eat smaller meals and often to help with my stomach problems and pots.I just don't remember to eat that often so it will have to be something that I have to timetable in to start with until it becomes habit.

- Uni study - This is one goal that I really have down which is good.  I am in the process of signing up to open university, my credit transfer has gone through and I just have to send in my disability form and register for the module that I want to take this year.  The module I'm taking is a 60 credit one so is half what I am used to taking so I'm hoping that I'll be able to cope with that amount.  I need to talk to someone about funding as well as I'm not entirely sure how that is going to work.  For this goal I am in the most favourable outcome so that is rather nice!

- Exercise - I haven't been that hot on doing a lot of exercise lately I must admit, a lot of days I forget to do my physio let alone exercise as well.  The expected outcome for this goal is to carry out exercises once a week so not too much expected so I can at least mange sorting that out in the next few weeks.  I now have a  trimbike that my mum gave me and have started using it today. Luckily my joints seem to be okay with doing it but my heart rate doesn't shooting all the way up to 150bpm

- Swimming - I don't think I have been swimming since I have been back home from Stanmore which is a real shame as I have some physio exercises that I could do in the pool and walking around in the pool will help my legs somewhat.  I am planning on starting to go to the disabled swimming at the local pool on a Thursday morning as they heat up the pool so it is warmer than it normally is.  My joints really ache in the normal temperature of the pool.  My expected level is to go swimming once a fortnight - once a month which is more than achievable.

On the whole the goals that I was given weren't all that difficult so I'm not entirely sure why I haven't been able to get my head in the right position to be able to achieve these.

Plan of action

- Be up and out of bed before 9am
- Do stretches after breakfast
- Set up reminders for all meds
- Take all meds
- Eat 5 meals a day of around 360 cals each
- Drink at least 3 bottles of drink a day (20oz water bottle)
- Do physio every day
- Bed by 11:30pm
- Swimming at least once a week

Once I have those few basics into my routine then I will add other things into the mix.  I don't want to try and change too many things at once otherwise I'll never do any of them.

My follow up is 8th June so I better get myself going with these things!

Appointment with Dr Cohen in November so that gives me a chance to get a lot of things back on track including the weightloss.