Around 9 years ago I was diagnosed with M.E and Fibromyalgia and I was also recently diagnosed with Hypermobility (in my hands). These illnesses have changed my life dramatically and I have learned to adapt the hard way.
I had to give up working as a Driving Instructor and my OH then became the main breadwinner.
M.E and Fibromyalgia affects my life daily, without fail it is ALWAYS there. The only way to describe it to others is RELENTLESS!! Walking normally feels like walking in a swimming pool, and every morning I wake up feeling like I have just gone 10 rounds in the ring with Mike Tyson! In short just think ‘proper’ flu without the head cold and you are on the right lines. That’s before we even get started on the pain levels throughout my body and more recently in my hands (due to the Hypermobility). Everything hurts……………..all of the time, with no respite!
It’s an invisible illness in as much as people will look at you and see nothing wrong, but they do not realise that every step you walk hurts, and doing anything physical (even just walking) is unbelievably draining.
People think that M.E/ Chronic Fatigue/ Fibromyalgia just means that you get a bit tired……..WRONG.
Some of my symptoms:
Overwhelming exhaustion ( can hit you like a wall and there’s nothing you can do)
Muscular pain ( my whole body is sore to the touch….a hug can hurt!)
Symptoms of IBS
Brain fog ( cannot think, get words out, concentrate)
Noise and light sensitive ( every noise is deafening and light just ‘pierces’ my eyes)
Inability to sleep properly ( being so exhausted you cannot sleep!)
Numbness in my hands ( which can leave me with no grip to cook etc)
No temperature control ( either freezing or on fire but it does not regulate!)
Symptoms vary from day to day but I still can lose several hours a day to my bed. Getting up, showered and dressed can exhaust me for the rest of the day. Winter is definitely worse to deal with as during the cold weather my body works harder to keep warm and therefore the exhaustion is worse.
Although there is no cure there is a management programme available at Kings College Hospital London that could possibly help me to manage the condition better and be more productive, however, my NHS borough refused to pay for treatment. I am left to live the ‘boom and bust’ way- if I feel ok I do what I can and suffer for it afterwards ( which can be for several days).
This has been a huge adjustment for both myself and my family and I still find it difficult to accept that it will not go away. I push myself as much as I can, when I can.
I took part in a Pain Management Programme last Autumn that ran for 7 weeks (one day a week) which was probably the best thing I have done. I met some fabulous people (now good friends) suffering in the same way, and now feel like I have a support group around me.
I want to share online as much information about how this affects my family, me as a person, and any tips that I could pass on in order to help others.
Feel free to ask any questions or leave links in my comments to any posts you have found helpful