CFS FM EDS...

If I put all these letters after my name they'd make me sound incredibly clever to the untrained mind... but they're actually just some of the things stopping me from having real letters after my name!

My health is probably going to be a big topic in these blog posts as it's one of the main factors in our journey to have a family so I'll give you a brief overview:

I was never the healthiest child but I only ever had coughs and colds etc. perfectly normal childhood illnesses.  Around March 2009 (when I was 16) I had a throat infection which caused severe vertigo and put me off my feet for a couple of weeks and following that I started getting ill a lot, nothing really specific just feeling under the weather all the time.  I saw numerous doctors, specialists, consultants and had test after test but nobody could diagnose tell me what was wrong with me.  A few months previous to this I'd got to know one of my mum's friends who has fibromyalgia and the more time I spent with her, the more she pointed out that my symptoms were very similar to hers so I mentioned this to a doctor but I was essentially told it doesn't exist and the doctors lost interest in even bothering to find out what was wrong with me.

Fast foward to the beginning of 2010 and, having exhausted all our other options, my grandparents paid for me to see a private consultant who had (within about ten minutes) examined me, spoken to me about the past year and given me an answer.  I was so relieved to know what was wrong with me and that it was nothing serious that I didn't even consider the implications of what he was telling me.  The prognosis was:

Fibromyalgia/Chronic Fatigue Syndrome - These two cross over each other quite a lot and whilst both cause pain and fatigue, they stem from different things and have slightly different symptoms.  The overlap however means one exaggerates the other.

Ehler's Danlos Syndrome - I only have this in a very mild state but it basically explains my unnaturally soft skin, easy bruising and inability to heal even the tiniest of cuts - also my body's non-reaction to local anaesthetic which has caused issues on more than one occasion!  This has never been confirmed as such, so who knows!

It was also mentioned at that time that due to high testosterone levels, slightly excessive body hair growth and unusually heavy periods I may have Polycystic Ovary Syndrome (I did have a scan for this later on but it was inconclusive and there's little else in the way of tests).  I'd had a conversation with a doctor about this when I was around 13 and his immediate response was "Well you might have it and may not be able to conceive but that's not something to worry about now," in a very brusque tone.  Whilst he may not have thought so, despite being so young, I certainly did.  I've always wanted a family and this played on my mind for quite some time.  Either way, I still have no official diagnosis but it's a factor to consider when we decide we'd like to have children.

Over the years I've tried various medications (none of which have worked in the slightest so I am now medication free), physiotherapy and other methods, some of which have helped, but my conditions are not about 'treating and curing'.  They are about learning to cope and manage symptoms, which I feel I do quite well most of the time.  I've built myself up to quite a rigourous exercise regime (at least that way when I ache all the time I have a good reason and it doesn't get to me), I try and eat healthily and I limit my activities around the things I need to get done.

I've suffered with mild depression on and off over the years but usually a few months of medication and I feel well enough to be med-free again and stay that way for months or years at a time.

This year, I have been diagnosed with Carpal Tunnel Syndrome which is where a nerve in your wrist is under too much pressure causing pain, numbness and tingling in the hands.  Although present in both hands it is only particularly bad in my right one and I've been given the option of surgery which I have an appointment to discuss on August 12th.  It's not bad enough yet for them to recommend surgery but because of the Fibromyalgia, the symptoms are exacerbated and they told me I could opt to have the operation (a relatively simple procedure) considering steroid injections, wrist splints and other methods have failed.  I'm not quite decided but I think I'll probably go ahead with it.

On my birthday this year (last week) I was sent to A&E for a few hours with breathlessness... some oxygen, steroid injections and tests later I felt much better and they decided it was either an asthma attack or an allergic reaction.  I've never had asthma but this is happening more and more often (although never previously bad enough to seek medical treatment) so that may well be another one to add to the list but we're seeing how it goes.  I have an inhaler now so hopefully, even if it starts to happen again, a couple of puffs and I'll be right as rain.

On a good day you'll often hear me say that my health could be a lot worse and I cope perfectly fine.  On a bad day you'll hear me complain that I no longer remember what it's like to not be in pain or not be tired.  Pain and fatigue has been my daily state of play for over five years now and I've accepted it will only get worse with age BUT I refuse to let it control me and get in the way of the things I want to do.

I have an amazingly supportive partner who is by my side through thick and thin and has accompanied me to countless doctors and hospital appointments and I know for a fact that he makes everything ten times easier to deal with.

Wow... when I see it written down it seems a lot worse than I remember!  I know it's a lot to take in but I thought I'd use this post for reference as it's going to come up a lot so I may as well use it as a starting point so it's clear what I'm going on about!

Anyway I think I've said sufficient for now - what a depressing post!  I promise it'll get better!