M.E/ CFS

Around 4 years ago I was diagnosed with M.E and my life definitely changed!

I had to give up working as a Driving Instructor and my OH then became the main breadwinner.

M.E 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.

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!)

Nausea

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!)

Headaches

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 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.

This is a major part of my life that I have had to come to terms with. I have no local support groups where I live and wanted 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.

Related Posts:

Top tips for keeping warm – M.E Related

Top 5 tips for saving energy levels – M.E Related

 My Newest Family Addition!

 M.E Awareness- How much do you know about it?

M.E Awareness Week starts 6th May

Energetix Magnetic Jewellery Review- M.E Related

 

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6 thoughts on “M.E/ CFS

  1. Pingback: Top tips for keeping warm – M.E Related | Mum In Meltdown

  2. Pingback: Perfect Balance Bedding Range Review | Mum In Meltdown

  3. sammy

    Hi mum in meltdown … just found your blog via Twitter and been having a peek around. Sorry to hear you have MS and your daily struggles (btw loving the new addition lol).
    I suffer with fibromyalgia and have similar struggles, though not as bad as you clearly have, but I can totally relate to what you are saying and it’s HARD. Very very hard somedays, but well done you on being open and honest.
    I’ve not long been blogging at all (just finding my way and loving it) but I’ve written a couple of posts you might be interested in: https://seizeeachday.wordpress.com/2015/01/04/four-days-in-and-my-first-weekend/ and https://seizeeachday.wordpress.com/2015/02/02/pink-fog/ – I’m currently trying to lose weight which I’m finding very hard and very slow – I don’t think my age (post 40) and the fibro are helping (due to lack of exercise) – aaaarrggghhhh!
    Hey ho, onwards and upwards as they say.
    Nice to find you and hopefully we can share & connect.
    Gentle hugs xxx

    Reply
  4. John Stephenson

    Hiya, just read your blog and comments about ME. I have been a sufferer for 26 years. The intensity levels have varied. In the 1st three years it was awful and it cost me my marriage. My wife struggled to cope with my deterioration from a successful career person to someone who was constantly ill with an incredible array of symptoms. I rallied gradually, remarried and built a career in professional football. I was always poorly but my new wife helped me to manage the illness and I was able to get back to working as intensely as I had prior to the illness. Things seemed great, never really back to normal but compared with the first 3 years it was a huge improvement. I began to take things for granted and dug a bit deeper as my career progressed and then in mid 2013 I began to deteriorate. I tried to hide it but the industry is unforgiving. Towards the end of 2013 I felt dreadful. I was sleeping in the toilets at work, my concentration capabilities narrowed to just a couple of hours a day and was utterly exhausted. I eventually had to give up my wonderful career. We lost everything we had built over the good times and I am worse now than I was when first diagnosed. Having said that I am so fortunate to have had the good years sandwiched between the awful ones. Many ME sufferers don’t get that. I hope you get respite from this dreadful illness and maybe even recovery. God bless you and your family.

    Reply
    1. muminmeltdown Post author

      Thank you, I have felt a slow decline over the years but I try desperately to do as much as I can when I can. I am lucky that my family are very supportive and understanding so it has never caused a problem that way. I really hope you get another respite though and soon :)

      Reply

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