Monday, 16 July 2012

My Story, by Abi

Today I have a guest post form the lovely Abi from Abzi's Story. She was diagnosed at the age of 18 with CFS and here she talks about getting a diagnosis, her past present and what she hopes for in her future.

Warning: The following will be a long post!
I was 18 when I got diagnosed with CFS/ME. It was a long winded process which seemed to take forever. The doctor informed me that she believed it had been undiagnosed for a long period of time. I’d experienced insomnia since the age of eight and just prior to that and every year following for about six years I had tonsillitis. She believed I’d had CFS since I was eight years old. I remember then everything starting to fit into place. It had been like I was trying to build a jigsaw with the wrong pieces but in reality the picture I was expecting to fit together was not actually the picture I was working on. (I hope that makes sense.)
I would play with friends and half way through decide I wanted to watch a movie because I just couldn’t face running around anymore. CFS is something that I know quite a bit about. My best friend has it. She was diagnosed at the age of 8. I was the only friend her mother was comfortable with her playing with for long periods of time because I didn’t push her to do too much. Looking back it’s probably because by that point, I wanted a rest too.

I remember cross country running at school and being told I was unfit, that the reason I was aching so much was because I needed more exercise. It felt like my body couldn’t pump the blood to my muscles fast enough. Being told that my body was made for long distance running but feeling the ache in my muscles get worse. I didn’t want to be told I was unfit (what teenager wants that?!) so I tried to ignore it and push myself further. I would get home from school and nap whilst doing my homework.

I got several reactions when first diagnosed, after describing my symptoms to people these are some of the responses I got:
‘so basically you feel as tired as the rest of us but you make a bigger deal out of it’
‘oh I know someone who has that! They found (insert “magic cure” here) really helped them. You should try it!’
‘it’s all in your head’
‘so basically it’s an excuse to be lazy’
(insert sarcasm here) and this is probably my favorite :
‘wow, so basically you’re going to be a rubbish wife and mother’

Yep that is exactly the kind of response that helps to boost me with my new diagnosis.

I discovered a friend of the family had the illness. I know him from church and he does so much, if you didn’t know he had it, you would never guess.
That’s the thing with CFS you can look completely normal and live a pretty normal life on the surface. It’s an unseen illness.
Well I asked this guy a question, on the verge of tears (depression comes with the illness so give me a break for the emotions) I asked: “How when you have CFS can you do so much?” the unsaid part of my question was ‘and I can do so little’ I was having a what’s-wrong-with-me? moment.
He stopped what he had been doing and became really serious before asking when I had been diagnosed. I talked with him for a little bit and he became my coach. He’d come over whenever he saw me and ask how I was doing, if I’d made it out of bed for 10 minutes or an hour that day.
He explained that some things you can do and people will be completely unaware of the ‘thing’ you have to deal with, but other things require a complete change of lifestyle. Before he was diagnosed he ran several marathons, 22 years after the diagnosis he gets symptoms if he runs 100yards. He also spoke about people’s reactions, how some try to understand and others really aren’t helpful.
(Yes I’ll admit for some people I wished they would get the illness and then they would realise how I made a ‘bigger deal’ out of tiredness)
You say it’s in my head? Send me to a psychiatrist and let him get rid of it.
Also with the so called “magic cures” that people find. The illness is individual and different things work for different people. If someone finds something that works for them that’s 100% fantastic but it does not automatically assume it’s going to work for me. For a while I tried each and every “cure” I could find. I wanted the illness gone. I spent hundreds of pounds to get no better. I added drops to drinks and gulped them down (whilst suppressing the urge to vomit). I had “miracle shakes” which I tried for 4 months, taking them 3 times a day, same flavour and it didn’t fully dissolve so it was bitty (I’m a girl who hates bits... I get smooth orange juice!) That was TOUGH! 4 months I took them for and no improvement. After 3 months I got my Mum to join me on the challenge and by the end of the month she’d had enough! I’ve cut out sugar, and chocolate, I’ve drunk only Aspartame free drinks (it’s such a struggle to find I stuck with water). I’ve increased the amount of fruit and vegetables I eat, eaten more grains and healthy foods. I don’t drink alcohol or caffeine high drinks.

With my religion there is a health code we are asked to abide by. It’s called the Word of Wisdom, no smoking, no alcohol, no hot drinks that can burn the lining of the stomach. All things that make sense and which your doctor would recommend. Some people take the attitude that if you live that you won’t have CFS. Not true. It’s like saying if you eat right you won’t get cancer, or diabetes, or depression. Yes, it does help. Yes, CFS causes alcohol intolerance and if I did drink I could have ended up in hospital due to this. I have the health benefits of not having to deal with that because I live the Word of Wisdom.

Now for the last comment I received the one that plays in my head every time I’m having a bad day. The ‘wow, so basically you’re going to be a rubbish wife and mother’.
This is something I feel I need to address in a big way and in reality I don’t know the answer to this yet. I worry that my CFS will impact on my ability as a wife and mother when I get to that stage. I hate to think that someone has to ‘settle’ for me because of my illness. But for now what I have realised is that nobody is perfect. Everyone has something that they want to change about themselves, whether that’s weight, nose shape, bad habits or even a chronic illness.
Within those issues that all of us face there will be good days and there will be bad days. There will be days when we wake feeling we can take on the world and days where all we want to do is curl up in a ball and hide under the covers. In the marriage vows it states that we love the other person ‘for better for worse, for richer, for poorer, in sickness and in health’. There is no perfect person. When we love someone we accept them for who they are, the good and the bad, the easy days and the hard days. We work together to create a team, to create strong points.

I was speaking to someone who loves me and after the initial reaction of wanting to cause physical harm to the person who made that comment roughly 6 years ago we talked about the qualities of a mother. Yes energy is needed, but there are so many qualities aside from energy that are needed, love, compassion, the ability to understand the needs of a child, patience and so much more. I might lack the energy, but this person listed qualities that they see in me. Without trying to make anyone feel inadequate, not one of us has 100% of the time every quality that is needed as a wife and mother. Some qualities we learn are needed in the exact moment that we realise we’re lacking it. This life is about growth. I am not perfect, I won’t be the perfect wife or mother, and I know that. However, I also know that I have strengths and for now, I’m focusing on those.

by Abi

If you have CFS and are intrested in telling youe story via a guest post, please get in touch.


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