It’s not necessarily the endless burning and knowledge that you have to plan out every possible eventuality and how to control things when they don’t go to plan.
And the never ending dull ache that never lets go.
Or knowing you’ll be on pain killers, anti-depressants, muscle relaxants, sleeping pills and whatever other cocktails they’ve allowed us to get addicted to.
Or that you’ll have to explain every little detail to each and every new person that enters your life. Or even the inability to do the normal things people our ages will, and do, do.
And not even the stupid little things, like snuggling up on the sofa and watching films (on your own or otherwise) because constant repositioning and shuffling around due to no one position being comfortable for more than about half an hour.
Or the almost constant pounding headaches, muscle aches, anywhereaches, everywhereaches.
It’s the knowing that nothing will ever take away the helplessness and the feeling of utter despair and knowing you’re upsetting the people around you by being so depressed, and in so much agony.
But not one of us would ever wish it upon another.
Let’s be realistic here, if we were able to, each and every one of us would be fighting nonstop to take every single other sufferer’s pain from everyone else.
You know we would.
And it’s the knowing that the likelihood of the cure being found is made oh so much smaller by the lack of interest from others. And that you’ll have to face almost every person in the world who will mutter the words,”You don’t look ill or disabled though...” With that judging look on their face that you know you will never stop wanting to punch.
This is killing some of the kindest, strongest, funniest, most beautiful and most caring people in the world because you can’t see it and it so; it doesn’t exist. Since when should that be allowed?
It shouldn’t.
Written by
Berthy
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I'm genuinely sorry it made you cry, I just enjoy writing and love sharing what i write wherever I can. Haha no worries! I'm just glad to hear I'm not the only person that has problems with getting this website to work sometimes! xx
Oh am I with you on this. I saw yet another consultant last week, I am being treated for Polymyalgia Rheumatica, possible fibromyalgia but have to rule out everything else first. He told me that the good news was that it is not all in my head, as the blood test prove there is something going on somewhere but what and where they are a loss to find out and may never do so. The bad news is that it won't get any better....how he knows this when he has no idea what is wrong puzzles me but there you go.
I explained this to my neighbour who has been my friend for over 12 years. To which he said Yes but telling you that will make things worse. You know I had ME years ago and my councellor said it was a mind set thing. I feel pain when I work and get exhausted but I work through it, put up with the pain and tiredness and eventually I don't notice it!!! You just have to stop thinking how you used to be and except this is how you are now, if you got a job it might make you feel better. If you won loads of money you'd soon recover wouldn't you?
Do I need this friend I ask myself? Actually he's upset me so much I've been crying on and off since he said it and feel even lower now. On top of the things I've mentioned I am recovering from a broken ankle, nine weeks ago, due to a fall, I'm very off balance most of the time, I've got diverticular disease, arthritis in my back, neck shoulder, hips and jaw. Plantar fasciitis in my foot, busitis in my hip and I'm undergoing gynae investigations and waiting for a PET scan. I'm fighting for DLA and DWP now I've been put in the work related activity group....Why does no one understand that just because you can't see it that it doesn't mean it is not there? It makes me so mad.
On the dla bit etc..get an appointment with your local mp/councillor...get a supportive letter from your gp first and take it with you to the appointment. Ask him to write to the DWP to be put in support group...I did after coming to the end of my tether and feeling suicidal...I am now in the support group( reviewed in six months though..)xx
Regarding your "friend"...post a leaflet about Fibro etc thro her letter box..then ignore her if she doesn't respond...I have had to move on .. Not only from friends but my own family... This made my depression and health 10 times worse.. Try to contact a support group in your area...I'll write more later...anxiety getting to me..... A cruel illness... Not only physically but emotionally..my very best to you and love. Xxx
Sorry..re your friend ... I meant his not her..( and.. I don't care what anyone says... Most men have worse reaction when we tell them about it than women...I think they are programmed that way!!..Wendy xx
If I'm honest no, you don't need that friend. I went through this very early on, not long after my diagnosis, and being 18 it was VERY difficult to accept everything. Especially since when I was given a possible diagnosis, I was 15/16 and that was when things really started going downhill. I know it takes a lot to accept that the people we once relied on with everything, no matter how long you've known them, don't accept who you've become. And it could be a natural transition into a different person, or the fibro that has changed you - made you grow up, or no longer the fun loving person you once were.
I know that.
And I know that no matter how many friends you gain through either being on here or through other support groups. The loss of the people like your neighbour will never get any easier and nothing any of us can say will ever make it easier. Only time can work her magic on that.
And the "I can't see it so it doesn't exist" thing, I simply sigh in contempt at. There is nothing that can ever change the minds of the belligerent and those lacking any concern for those of the others. You will get used to it, I promise you. But you will also never stop fighting it, in any way at all possible. I promise you that as well.
I'm always here if you ever need to release or talk, or vent, or simply have a chat. I'm always here.
Thank you for your kind comments. I've spoken to his wife about it and she said ignore him. His mother brought him up to be insensitive and not pander to illness so he has no sympathy for anyone and thinks everyone can think their self better. I just won't talk about it to him anymore, at least his wife supportive and more sympathetic. She recently had a hip replacement and said he never understood her pain either. Men eh!
I think we can all empathise with your eloquent words; they speak from both the heart and from a wealth of painful experience. Warm hugs being sent your way x
There was something I forget to add. However small it may be, the seed of hope remains. Please hold on to it even if it coexists with such heart wrenching despair Beth.
Never let go. You beautiful person. (((hugs))) xxxx
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