Living with CFS/ME and Fibromyalgia

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Living with CFS/ME and Fibromyalgia

Postby Jeany » Mon Mar 03, 2014 1:48 pm

It's just hit me that having these illnesses is rather like managing your finances.

I was diagnose with CFS and chronic myalgia in 2012, and I have really struggled to get my head round it, and have been constantly up and down. I hate the fact that due to pain and low energy etc etc etc I am now unable to do what I used to take for granted, such has cleaning the house from top to bottom, and going for long walks.

I have lost my job, because I am just not well enough to work, and now I am finding that I can do less and less both physically and mentally, Really really frustrating grrrr ! ! !

This morning after having a bath and feeling like a limp lettuce afterwards I wondered why a reasonably intelligent woman, who has brought up children single handed at the same time as persuing a career and managing my home and finances very well indeed cannot manage this god awful illness, and then I realised why :-

It's because I was always good with money, and luxuries never really bothered me, as long as I had a nice home and my bills were paid I was a happy bunny, BUT activity was a totally different ball game. I used to walk for miles, go to the gym, take dance classes, and keep my home and garden immaculate. All this as well as working and looking after a family kept me happy.

NOW it has finally hit me that I must save up if I want to do something just like I save if I want to buy something. If I have a bath instead of a shower then I have no energy the rest of the day. If I have family coming then I must rest and save my energy, so that I am not totally zapped by the time they arrive, and so on and so forth. Energy is the thing I am now saving for those special things ( and not so special things) not money. Energy is in very short supply, and I cannot go out and earn it like I could money.

Maybe I have turned a corner and realised what I need to do to manage my illnesses I'm not sure, and I sure as hell don't like the limitations that I have to set my self. Not having the freedom to keep active drives me absolutely MADDDDD !!! It would be nice just to have enough energy to do the simple things in life without having to check my energy purse, and think about what essential things are required before I can consider spending it on anything else. It is worse if you have always enjoyed an active life like myself.

What do we do ? How the hell do we pass our time. No energy prevents us from getting on with things, and that also restricts things that require mental energy. So what is there that requires no mental or physical energy ? I have more free time now since I was forced to give up work, and the days are very long and boring.

Oh well I think I am learning about my illnesses even if I hate them.
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Re: Living with CFS/ME and Fibromyalgia

Postby Meulan » Mon Mar 03, 2014 2:19 pm

Jeany, I totally agree with you! I too, was diagnosed last year around March/April time with Fibro and have since developed the CFS, and used to be able to do so much stuff around the house/garden and go out shopping etc etc!! Now I live almost as a hermit, take my time to dole out my energy, read absolutely tons of books whilst relaxing on my bed to get some more energy, or go onto FB or internet to look stuff up! I need to be doing 'something' with my brain all the time, as altho my body says No More, my brain tells me the opposite and 'not to stop'..... so I have to feed it with something! I have learned that its' OK not to have a 'show house' at all times, and that I just cannot do what I used to, but brain tells me differently!!!

The C-PTSD that I also suffer from, is also very disabling and makes me fearful of even leaving the house to get provisions in, so yes, you guessed it, I order online for home delivery! It is a very isolating disorder, not to mention, the total lack of comprehension by most friends/family!!

I hope this answers a few of your queries and you have a peaceful and stress-free week! x
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Re: Living with CFS/ME and Fibromyalgia

Postby Jeany » Mon Mar 03, 2014 2:39 pm

I too am housebound Meulan due to agoraphobia, which has reappeared after 30 years. My GP said it is because I feel so unwell. I am working towards beating it, so that I may enjoy a short walk again, but like you I feel very isolated and my laptop is my friend.

You take care now x
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Re: Living with CFS/ME and Fibromyalgia

Postby debbiealison » Mon Mar 03, 2014 3:37 pm

Hi Jeany, you are so right and the bordom is the worst I am not even able to read for long and even when i try my head is full of so much to do with how I can cope that its so hard to concentrate.
I was diognosed in 2005 but was suffering like most long before, the same year I had a bad car accident that really took it out of me and i stuggled to do basic things but I tried and even tried to work part time. About 3 years ago the cfs set in and you just get pushed from pilar to post as no one looking after me seems to really understand. I do get desperate some days. Iam 60 this year and I realise I am never going to be able to do much as i had to give up work. The pain as we all know is is the hardest thing to cope with, I do not know who I am any more. coming on this site helps as you know your not alone.
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Re: Living with CFS/ME and Fibromyalgia

Postby Jeany » Mon Mar 03, 2014 4:05 pm

I know what you mean it changes your whole life. I'm 57 but I used to look good for my age but these illnesses have aged me so much. My elderly neighbours have more get up and go than I have.

I seem to nod off if I try to read, but as soon as I turn the lamp off I'm wide awake again. Tossing and turning all night and in pain but I haven't the energy to put lamp on to take pain killer. Then when its time to get up I have to drag myself out of bed. Head thumping day and night.

What infuriates me is people going on about Yuppie flu, and its psycholgical. Bull.... do they think we make it up, and do they think we want an illness that people disregard. Absolute rubbish. Total ignorance. Even my relatives have said its nothing. I don't know what's up with me today ranting I must be tired. Again lol
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Re: Living with CFS/ME and Fibromyalgia

Postby FluppyPuffy » Mon Mar 03, 2014 5:17 pm

It is a juggling act when trying to live with these conditions and find a way to get each day without taking every single bit of energy and life force out of us :facepalm: :facepalm: :facepalm:

Getting your head round them does takes time, and can become so infuriating when you think that you've got things sussed, only for something to rear up and bite you on the :girl_moon: :girl_moon: and knock you all the way back again.

It took me 8 years to start to make progress with FM, and that only came about after counselling and a number of therapy sessions. Prior to that, I was constantly fighting against it and being knocked further and further back until I fell down that black hole to the lowest point I'd ever been at, which was truly :yikes: :yikes: :yikes:

On the day I was given the CFS dx, I was also offered a referral to the CFS/ME Service/Clinic covering where I am, so I said yes to it straight away as I couldn't face experiencing even a minute of being as low and hopeless as I had been with FM. And altho it has been bumpy at times with CFS in the mix, compared to how things were when I was just juggling with the FM ball, it has been some much easier to come to terms with. I'm not happy or pleased at having either condition, but at least we now have a truce, albeit a somewhat uneasy one.

No matter how long you may have been juggling with things, there are always new things to consider and learn about. After 14 years I thought I had a good understanding of the pain I experience with both conditions. After attending a 6 week Pain Management Program at the end of last year, I realised that there were a number of little things I had been disregarding and had forgotten I used to implement which I have now put back in place, as well as adding in some other little bits to make things more settled and manageable for me.

The really big issue I had to face with the PMP was my anxieties as it was a group session. The previous things I had done were 1~to~1s and it was years since I had worked in a group environment. The first couple of sessions were really :yikes: :yikes: :yikes: and at one point, after things flaring~up after the 2nd session, I was prepared to pack it all in :shock: :shock: :shock: I was persuaded to try the 3rd session and see how I felt before throwing in the towel, and I'm glad I did as things started to fall into place from then. I completed all sessions, improved in how I was moving around and times it took to perform certain exercises, as well as the number of reps I was able to do. The best bit was being able to :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: :girl_moon: at my anxiety as I hadn't let it get the better of me. In fact, being able to put a bit of it back into a box has helped with other things I've been dealing with, and altho I still have a long way to go with things, I'm now trying various self~help ideas to see how they might benefit me :bear-dancing: :bear-dancing: :bear-dancing:
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