how do I keep on doing this

All your fibromyalgia experiences, questions and answers.

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Re: how do I keep on doing this

Postby Tally1068 » Wed Sep 03, 2014 5:19 am

:-? I wont say I've accepted fibro, but I have found myself more accepting of it. It's the accompanying osteoarthritis that I rail against.

Over time I think our minds adapt more. It is what it is and one thing I wont do is fight it, it's too exhausting. Some people think that's giving in, but it's made me much more at peace with things.

As I've said before my motto is whatever makes my life easier is the way I go. I started off a few years ago using a stick, then crutches, now a wheelchair on the few times I get out of bed. The cartilage has completely worn away in my shoulders and it's way too painful to use them.
Reluctantly I've sold my car and am just waiting for a ramp to be built so I can buy a little motorised scooter which will at least get me out and about.

I've turned my bedroom into a bed sitting room with a little table top fridge, toaster, microwave and kettle, which has made things much easier. I live on my own so everything is that bit much more of a struggle. I've also invested in a second hand stairlift and two walkers- one at each level of the stairs.

All this has made things that much easier. I have grab rails put up and a stool in the bath which means I can still shower by myself. I also wear easy, comfy clothes that don't prove too much hassle to put on.

That's the practical things out of the way, I don't give a toss about being in a wheelchair and if people talk to the pusher not to me, then we ignore them. It's something that happens quite a bit and my theory is they are embarrassed.

But I get the impression that you are much more mentally down and struggling to come to terms with fibro. That's perfectly normal and something that I think we have all or are going through. You have to grieve for the life you've lost knowing this isn't going to go away.
Like any major life change all this takes time. Some people cope quicker than others. After all you cant change it, and it is amazing how, given time, your mind adapts to it's limitations.

Hang on in there and keep going, it will get easier to accept. Not that I'd wish it on my worst enemy, but a lot of people have difficulties and obstacles in their way. I'd rather spend my time looking for the positives (I don't have to cook, clean, iron or do any housework and I get the best seats in the house when I go to the theatre :-P )

That's not to say I don't have really bad times and get terribly depressed, I do. But somehow the good days are extra special and I so appreciate them.

I really feel for you. Sending positive vibes and hoping that life will get more tolerable for you. xxx
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Re: how do I keep on doing this

Postby whoami » Wed Sep 03, 2014 11:34 am

Tally....I also find dealing with the osteoarthritis to be exhausting. It is a lot worse than the fibro at times. It is then that the Fentanyl is just not enough. Not meaning to whine here but having it in feet,knees,hips, back shoulders and hands, sometimes I wonder how much more pain can a body produce and endear.

My Dr said to me you are allowed to be angry, to cry and get frustrated with all the pain and discomfort you have had. I also have IBS, Raynauds, Migraines, Sleep apnea. I had a stroke at 47 along with Bells palsey at the same time and have dealt with cancer as well as having been in the operating room over 25 times with infections, debridements, slow healing taking a year sometimes to close by packing.

I really feel for those of you going through excessive discomfort. It is here so we might as well get used to it. Xx

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: how do I keep on doing this

Postby mimildred » Thu Sep 04, 2014 12:50 pm

Hi Dazzleship

I have only been recently diagnosed, after insisting my GP referred me to a Rhuematologist (took a complaint to Practice Manager to get the referral). I am struggling to walk, and so have just asked for a referral to Occupational Therapy. May be worth a try for you? They will, according to my research, help you find aids you need (and possibly provide them for you) for walking, doing things around the house etc. Although I have already bought stuff for myself (perch stool, stick etc) I thought it may be best to get advice from a professional. If not, I haven't lost anything!

Hope you feel a bit more positive from all the earlier posts. xx
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Re: how do I keep on doing this

Postby dazzleship » Fri Sep 05, 2014 8:18 pm

oh - first of all thank you to all who took the time to reply, I really appreciate it. hugs to all :grouphug:

a few of you have mentioned a wheelchair.. I don't think I'm mentally ready for that stage yet. I told my husband about these replies, he says it's something to think about for the future. he doesn't seem shocked by the idea which I guess is good. but I think I'll park that idea for a while.

my GP has already referred me to rhumatologist, the referral took place about 3 or 4 weeks ago but it's a long wait - can be up to 12 weeks apparently (gotta love Scottish NHS :roll: ). I'm really hoping rhumatologist will be able to help somehow, especially with my hypermobile joints which I really think are causing some of my problems.

as for washing my hair in the bath - I haven't been able to get into a bath for ages (hip and back far too sore to climb in). I have to wash standing up I'm afraid. :oops: we are planning to get the bath replaced with a shower cubicle when we have the money but it won't be anytime soon.

oh and believe me I'm not bored as someone suggested! I work full time (just happen to be on holiday this week). as for sitting around, I'm only able to do that this week cos I'm not at work. but I hate the fact that after a day out somewhere (or even a half day out lol) I need the next day to recover.

lisa - so sorry to hear you are suffering in the same way. just the fact that you made the time and effort to reply to my post has helped me so thank you for that. I hope you feel a bit better soon. hang in there. :hugs:

carolad - my knees would give way if I tried to stand like that! my hypermobile knees like to lock in the straight (or slightly bent back as it were) position when I bend over or even when I stand still.

I suppose I was quite mentally down when I wrote the post. feeling a bit better today (reading all these replies have helped too as well as support from hubby) but I know you're right, I do struggle to come to terms with it. it's been two years but I'm still stuck on the accepting phase. somedays I think I have accepted it, then other days I realise that I really haven't.

was listening to 'Ordinary World' by Duran Duran yesterday and it struck me - "where is the life that I recognise". had to get through the rest of the song with teary eyes.

well again thanks to all, you really are a great bunch of people and so helpful just by being there.
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