Tuesday, 16 July 2013

So you have your diagnosis now what? Phase 2

When I first started this blog I fully intended for it to be chronological. However as events happen I have found myself wanting to blog about them. I think this is also indicative of life with M.E because there is no such thing as order or a set pattern. Flare ups can sneek up on us when we least suspect them and likewise good days, if we are lucky or good moments can come our way. Then again is that not life? No matter how much we think we have a handle on our lives, life will always step in and shake things up, either for the better or for the worse. We have no power to stop it, no way of controlling it but we can strive for a better life and make good things happen and most of all we can control how we deal with it and that is our trump card against M.E. Learning to adapt; facing difficult decisions; trailing countless medications and homeopathy: re-claiming that part of yourself that you feel you have lost and learning that it's important to put your self first every once in a while. Or if you have a chronic illness a lot of the time. There is also that rawness of reporting things as they happen; recording life in the moment to get a true sense of what it is you're feeling.
But for now I want to go back to when I was first diagnosed with M.E by my GP. 

As I have talked about in the post 'so you have your diagnosis now what?' there is a variety of different, more specialised help available from the NHS, dependant on where you live. I am fortunate enough to not only have a few understanding GP's at my doctors practice but also a specialised M.E/ CFS service close by, which my GP referred me to. However there is a waiting list for this service, which goes to show the scale of sufferers out there. This actually shocked me slightly; how could so many people be affected by this condition and yet very few people know about it? Including myself. I guess it is down to that public facade again. How we can look relatively healthy on the outside but on the inside we're grimacing in pain or cursing the fact that if we go down one more aisle in the supermarket we'll have hell to pay tomorrow or maybe longer. That is of course if you can get out in the first place. No one except our nearest and dearest, our biggest supporters will ever see us at our worst- face down in our cereal, or crying when the pain gets too much to handle and too exhaused to even open our eyes. It's just not something you see in public, for obvious reasons. This also shows the lonliness of living with the condition, how you can feel like you are the only one and cut off from society. I think this is partly the reason why this service in particular run their sessions in small groups. It definitely establishes a sense of community and support, as well as learning from others that are in the same situation. People that know full well what it is like without having to explain to them. One of the 'rules' of the group was to not turn our stories into a competiton, because everyone of us was suffering and knew exactly what the condition entailed. There was no place for "well my M.E is worse than yours." At the end of the day as much as the clinicians are there to help they can never truly understand the condition from a patients perspective. On the other hand however the waiting list is illustrative of the fact that it is only a limited service, they only operate one day a week, which again is a shame.

My first experience of this service was the initial assessment, where they see how much you understand about the condition and to assess your symptoms to see whether their methodology (ooo not used that word in a while, it reminds me of my dissertation) is right for you. You also get half an hour appointment so that you can go over your long lists of ailments or try and remember things. I think they like to make it very clear that they are not offering a miracle cure. No if you only eat blue food then you will soon be back on your A game remedies. They make it clear that they can offer advice and solutions but that ultimately you have to do the work too and accept that there are no quick fixes. If there were then of course we would all be dosed up on blue foodstuffs and they would be out of a job, nor would this blog exist.

This service in particular runs a 6 week clinic, where you attend for 3 hours one day a week for 6 weeks and then you have reviews at 3 months, 6 months and 12 months. This may seem like a big commitment to some, not only being well enough to attend but also for anyone that is working to get the time off and again this is part of the assessment. They do make it clear though that even if you are feeling at your roughest to try and attend, even if you need to lie down or fall asleep (they won't get offended) because at least you can try and follow and absorb some information. It did look funny though all of us waiting in the waiting room with our comfy chairs and cushions but hey if you're not comfortable you're less likely to concentrate and 3 hours feels like an age.

The clinical team is made up of a psychoanalyst/ chronic pain physician, a physio therapist and a dietitian and together they try to look at the condition from a lifestyle perspective. In effect, as there are no medical solutions as such, except medications for symptom control they advise on the psychological, physiological and dietary changes that can be made to help manage the condition. Manage being the key word, perhaps even the Holy Grail until there is a cure. In essence what they do is teach you to start listening to our bodies again and re-learn some basics that you have probably been neglecting, such as eating regularly and the importance of routine. As well as helping you to look at the way we deal with having M.E emotionally. Like I mentioned earlier helping us to to realise that how we respond to having the conditon is within our control, somewhere, as hard as it is. Looking back now I'm not sure whether I should have waited a bit longer to attend but I think I am just saying that given the current state of my legs. At the time though I was desperate for as much information as possible and as soon as possible because ultimately I wanted to get back out there and be able to go back to college. They do also reccomend that it is best to attend as early as possible.

The information is in fact valueable at any time and in no way am I saying that what I learnt there was a load of twaddle because I have since got physically worse. Sadly that is down to this bleep of a condition, it's the nature of the beast so to speak. Before my legs wandered off I have managed to have some 'good' days but perhaps now that I am struggling more physically I can appreciate all that I learnt there even more, because I have the skills to help me through it. A bit like a test to see if I have been doing my homework and without that knowledge I might not be able to deal with this flare up as well as I am.
So I am going to write a series of blog posts about what I learnt there. It may not be applicable to everyone, not even to me, as everyone is an individual and experiences M.E in their own ways. Also note that not all attendees improve physically and will succeed in managing their M.E at different times. I still think I am a long way from being managed but my psychological outlook is better. Again it's all about empowerment and taking M.E by the scruff of the neck and saying "I am going to do everything in my power to beat you." Rah!!


  1. I am so glad you are being proactive (as much as you can under the circumstances) and trying to manage life around your body's misbehavings.

  2. Thank you Liz. One day I will make it to Cali :-)

  3. You'd better! Remember that the US is very wheelchair friendly :)