Thursday, 20 June 2013

So you have your diagnosis now what?

So you're at the point where you have just been diagnosed with M.E/ CFS and can let out a small sigh of relief that there is a name for this monster that's been attacking your body and that it is definitely not all in your head. I'm sure there are very few people that could conjure up this all encompassing and debilataing condition unless they had experienced it. This is not a let's draw some red spots on with your Mum's lipstick and warming the thermometer on a hot water bottle type illness. Although it would be interesting to see Daniel Day Lewis go all 'method' acting for a role about an M.E patient. Then again they'd never get him to set. Anyway now that you have this diagnosis what do you do with it? Who do you see next? What medications do you take? Essentially what do you have to do to get better?

Oh if only we were given a magic lamp upon diagnosis! Because as I have said and as many of you will know all to well, there are no set answers to those questions. The medication that you take depends on the symptoms that you present and using a system of trial and error to see if they offer you any relief or make you feel worse. And symptoms can vary all the time, whether as part of the M.E or side effects from other medication. For example I need to take anti-inflammatories to manage my pain however most anti-inflammatories have an adverse affect on my stomach meaning that I need to take other medicatin to counteract this. This is made worse by the fact that I have a hernia so I have to be careful of that and have had to test different types of pain relieving tablets that manage the pain and do not upset my stomach. Sometimes it does feel like asking 'what would you rather have? This or the side effects?' But keep striving for what works best for you and your body. We suffer enough as it is without anything else being added to the mixing bowl. Who eles has a handbag that resembles a chemist shop?

As for who do you see next, if anyone at all, it seems to be very much a case of a post code lottery and depends on what services are available within your area. This is where you find out how much your local health board acknowledges M.E/CFS. Information on this can be found on www.meassociation.org.uk/?page_id=1382. They note:

'Please remember that while patients can contact any of the services for information, referalls for assessment, diagnosis and treatment must be made by your GP or the professional responsible for your healthcare.'

Also note that these are NHS services. The ME association has a database of support groups on www.meassociation.org.uk/?page_id=1185. As you can see it varies considerabley. Some areas have consultants with an interest in M.E and others have more specialised programmes or services that offer a whole body/ lifestyle approach in groups or individually. Sadly though some areas have nothing. I can only hope that in these areas that there are an abundance of good GP's that take M.E seriously and treat their patients with compassion. It is possible that you will only need to see your GP but again it depends on whether they are up to date with research and can see methods for improvement. Because this is what a consultant or service will offer you. Tested ways of seeing an improvement in someone's quality of life and a vested interest in wanting you to improve with their help. But there is help out there, don't let anyone make you feel as if there isn't. So it all depends on how you respond to different medications or methodologies or of course whether you want to look outside of the NHS.

Everything would be so much easier if there was a set notion of what M.E is? Or there was a typical M.E patient. But because there are so many variables it becomes harder to say what will help each individual and as I have previously mentioned our conditions are changing all the time too. Some people can continue to work whilst others need to cut back or not work at all and then of course everyones lifestyles are different and people are pulled in different directions. People have homes to run, children to look after, pets or caring for others and M.E will probably try to dictate these aspects at some point or another if not consistently. Sometimes it is like a needy child that will do everything it can to get your attention. Like when I was first diagnosed my legs worked fine unless I was extremely tired but now they are in constant pain. So this calls for me needing to access further help and maybe going through that whole rigmarole again of ruling out other conditions and probably landing once again at it's a flare up. It's not that you want anything more to be wrong. That really would be all. Just having a cold and M.E is torture upon torture but at least if the reason lay within the convines of "explainable" medicine there would be a better set of answers.

Surely there has to be something that is explainable. Why else would M.E exist? How can you go from feeling on top of the world one day to a crippled, exhausted heap the next without their being a "reason" for it? Because all your tests come back normal. Ahhhh it makes me so angry. M.E I hate you! I hope someday soon someone exposes all your dirty secrets and you are left quivering in fear as you are broken down just like you have done to me and so many others.

P.S I'm okay, not lost it just letting M.E know that it better watch out.

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