M.E / CFS
Another M.E sufferers words on M.E…
So I put pen to paper and this is what came out there was no plan just wrote as it came to me.
If only life were simple, feelings plain and clear, it would help me calm my mind and take away the fear.
I need to get these feelings out you may already know, the way the thoughts are going and how my fears they grow.
I feel so overwhelmed sometimes, well often, it is true, so what best way to deal with this when I’m feeling blue? Continue reading
I remember being healthy. Nearly 4 years ago I woke up sick, a feeling I had never had before. It just happened to fall on the beginning of the August long weekend, the kids were off with their dad and I figured I could just sleep off the bug that struck me overnight. I didn’t understand anything about this then, I continued to work, push and push and push myself, feeling worse. Because of this there came many days when even a simple shower was too much and it just couldn’t happen. I worked myself into a deep pit of illness that for a while I didn’t think I’d be able to climb out of. Continue reading
The 6th to 12th of May is M.E Awareness Week as well as the whole of May being International M.E Awareness Month with a M.E Awareness Day on the 12th of May.
- Did you know it affects 250,000 people in the UK including yours truly?
- It may be diagnosed as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS)
- M.E symptoms may include persistent exhaustion, muscle and/or joint pain, sleep disturbance, feeling flu-like and having problems with memory and concentration.
Well that’s the official bit from Action For Me but what is it like in real life everyday family life?
Well in a word its shit. (sorry Mum for swearing) When I first explained to the children I had M.E, I explained it in language they understood, mobile phone language. It’s like having only one bar of battery left where as everyone else have the full three bars. Continue reading
Action for M.E s has launched a new campaign called Time for Action. Action for M.E have started this campaign as people with M.E feel strongly that they have a raw deal from the Government and the NHS over the last 20 years compared with many other illnesses. Also that public understanding and awareness of M.E, while better than it was, still remains low. The new campaign Time for Action aims to highlight the plight of the 250,000 people in the UK with M.E and take some positive action. Continue reading
When my doctor diagnosed me as having M.E I cried. Not because I had M.E but because I was no longer a mum who was just always ill but a mum who had something to look up, learn about and understand. Having that starting point made it easier to tell my children what was actually wrong with me.
The actual steps of telling my children was made easier by the fact they are both young teens and live with a mobile phone permanently glued to them. They had a firm understanding of the battery life of their beloved phones. So I explained that they had the energy and resources of a mobile phone battery when it’s new. When at 4 bars (fully charged) they can do all the things they want to and only dip into 3 bars and then quickly go back up to 4 bars because they have the 3 bars working to carry on day to day things as they top up to fully charged. I then explained that I live on 1 bar. They knew all too well that when there mobiles are on 1 bar they can’t do much with the phone and have to reserve that one bar in case they need it. Living with one bar they understood that if I did too much I would quickly have no bars and would take longer just to regain that 1 bar and whilst I was trying gain the 1 bar there wasn’t a lot else I could do.
It has taken a bit of time to learn what I can and can’t do with my 1 bar but the children understand. Another thing that helped was being open, honest and talking about M.E it gave them the confidence to talk to their friends too about it. My daughter discovered she had two other friends who mum’s have M.E. This has given her reassurance that she isn’t the only child with a parent with M.E and she can talk to them about it too.
There have been two positives that have come through having M.E. The first was I had to downsize my job. I went from full time to self employed so that I could work from home when I could. Less money meant smaller house and smaller lifestyle. The children encouraged the change as they knew it would make it easier for me so would mean a happier mum and would also mean I was home more which meant happier children. They have learnt that life isn’t always about money; it isn’t always about chasing promotions (it was the stress from my job that brought on the M.E) us three as a family are now happier with having less. The children are doing their options at school and its quiet timely that they have learnt that a job isn’t always about what earns the most but doing something you enjoy the most. Secondly we spend more time together especially in the evenings. Instead of me working in the evenings we spend more time being together. They help with shopping, cooking and housework when I can’t do it on my own, so they are learning things like being less self focused and that food doesn’t cook its self.
It hasn’t taken much to give me a relapse. This summer I got enthusiastic about walking everywhere in a bid to save petrol and keep fit. I even started cycling and pushing myself each week to go faster, conquer another hill. I expanded the veg patch which involved moving about 50 slabs (twice) and digging over the compacted soil. Getting complacent was all it took to end the 4 years of remission. Continue reading