ME/CFS CRASH

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Hi all I’m just venting and possibly looking for some guidance.

17 years ago I suffered really bad fatigue sleeping up to 20 hrs a day. Eventually I saw a consultant just before we emigrated and he just said it’s the best thing I can do but I was never given a diagnosis.

It took about four years before I recovered more or less but if I over did it I would crash and sleep for 24-36 hours at a time.

I tried to manage my energy levels. Before this all occurred my brother of 36 died of stomach cancer. We were really close.

Five years ago I nursed mug mum at home for 18months . At the same time trying to run a busy business also from home. After my mum died - at just 69 I was devastated. I tried to get my life back to some sort of normality.

6 months later I was back to the joint and muscle pain, headaches, extreme fatigue I refreshed sleep etc. Medics assumed I was depressed I didn’t think I was but was referred to mental health. I took anti depressants and paid for private counselling- just in case. Nothing changed.

Eventually I was diagnosed with ME and fibromyalgia.

Most medications didn’t help so I stopped them.

For the past two weeks I have been wiped out. I went to bed Saturday lunchtime and just got up tonight for a couple of hours.

I still have the business to run and have to travel this weekend. I don’t really know what to do. I pray this doesn’t last. Any  helpful pointers would be welcomed. Thanks in advance .

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  • Posted

    Hate to say this but of you want to recover again you will need to give up the business. I did what you did for years fought it and all I did was make it worse, constant boom and then big bust when I couldn't do anything. I gave up working to recover and can now recover again. I know its now what you want to hear but unfortunately there is no magic overnight cure for this dreadful condition

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    • Posted

      Thanks for your honesty. I do very little now compared to what I was doing. We were working 16/17hr days all summer.

      My husband does so much.

      We live in Spain and are not retirement age. If we don’t earn we don’t survive sad but I do hear you.

      It’s so frustrating as I was ticking along reasonably. It’s so debilitating when it takes hold. I managed two hrs of being up and doing something this evening after two days in bed.

      Thanks knight 😊

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  • Posted

    I think you are amazing! But just remember to pace when you can. But if you can’t do it don’t feel guilty. 

    My name is Charan I am a single parent with 3 children and I lost my job of 20 years at Lloyds TSB Plc . They gave my no service pay just kick me to the side. Later on found my ex partner now was cheating on me.  Most of all I felt I was taken advantage of because I couldn’t defend my self. No energy! No life!

    I had needed to just talk to understand things again and was talking to the wrong people. Understanding things was hard as my head, would feel weird. I just couldn’t process things, understand things. Everyone just thought I’m depressed. I know my body, but to get the world to understand it’s shocking. That in this day and age we are suffering and all different stages of cfs/me.  People think we are faking it. Not understanding has to how we have all had to change drastically in our lives. Physically, emotionally.

    Years have gone by and my ex is bullying me in court. To pay for the divorce I have had to get a job, that I’m suffering at. But in life who cares. The government doesn’t no one does it’s just me and my kids. 

    I wish this illness never existed, it has wreaked my life.!!! But I will need to just carry on.

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  • Posted

    Hi.  I'm really sorry to hear you're struggling.  It's so tough when life just won't let you do what your body wants to.  So my experience is that I've been coping with this illness since 1980 when I first got sick.  It's never gone away completely but symptoms and severity vary.  For many years I hoped it would go away completely.  Now I know it never will.  A year ago I was the best I'd been for a long time which I put down to starting the low FODMAP diet thereby cutting out a lot of foods I couldn't process properly.  But then came a bereavement last summer and everything went downhill from there in a big way.  Now I'm starting to accept that things have to change in terms of what I expect of myself.  I've had four kids - now grown up - whom I still want to do stuff for and with and for and with my husband.  I've finally accepted I need help  in the house.  OK I've always needed it but never prioritised it before.  I've always said I can't afford it but now I realize I need it even if I have to do without other stuff to get it.  Sometimes I need to do something or want to - like looking after a sick loved on over several months for example then dealing with their death - and then I'm going to crash.  I'm in the middle of this too and it's a bad time.  But I know it will eventually pass and things will get easier again, based on many years experience.  My advice is be brutal about cutting out unnecessary things if you are at all able, do not be afraid to tell others how much you are struggling.  I used to think it would be obvious to others but it's so often not.  I now realize I need to help others to help me. I really hope you'll feel better soon and your energy levels come back up again.  I also hope you can simply stop when you need to.  You probably won't feel better until you can. And if you can't do that completely then carving out some real relaxation time in your day every day will help - a minimum of one hour a day total relaxation is what helps me.  No distractions like music, radio etc.  And two hours is better. Best of luck!

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