Old 02-09-2014, 12:23 AM #1
Shell63 Shell63 is offline
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City: Newcastle upon Tyne
State: Tyne and Wear
Country: UK
Diagnosed: 06/2007
Interest: I have been diagnosed with FIBRO/CFS/PAIN
Posts: 1
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Smile Hello - new today

Hello, I've just joined this site and I'm very excited about being able to talk to people who can empathise rather than sympathise.
I was diagnosed with Fibromyalgia/CFS/Neuropathy in my legs from my feet to my hips and in my arms from my fingertips to my shoulders aprrox 6 - 7 years ago.
I've gradually come to terms with my conditions. I take morphine everyday in the form of MST and also have Oramorph for when I have flare ups.
My partner [and my carer] has recently split up with me after 7 years together. Suddenly, I am left with a house to clean, all my hot cooking to do, and all the other things that come with running a house.
Everytime I do something i.e. the clothes washing, my fingers, arms hands and shoulders hurt as well as my legs and I have to spend all of the following day in bed recovering because of the pain I still have and because I am exhausted. Unfortunately, I cannot have these rest days anymore. I am frightened to go to sleep at night in case anyone breaks into my property [I live in a bungalow] and so sleep during the day however, I have two cats who need constant attention - well, every 2 hours they need to be fed and let out and then let back in again and so the longest I get to sleep is 2 hours at a time.
I hadn't realised how exhausted I was until I went out for a meal with a friend last Tuesday and collapsed due to exhaustion. I spent the next 2 days in bed, opening a window in the bathroom for the cats to get in and out of the house and feeding them very two hours. Over those 2 days I didn't eat, drink or take any medication as I was so ill and confused. It has been the same for the last couple of days too. My ex visited me after I'd collapsed and I must have looked awful as he's decided to stay tonight so that I can get some sleep and he'll go home tomorrow . Hopefully, I'll sleep well tomorrow as I don't have to worry about my cats.
You may think that I fuss the cats too much but once I was let go from work because of my Fibro etc prevented me from attending work as much as I should [ I appealed against their decision and now I am in receipt of a medical pension because of my disability] only have 2 friends who bother with me, one of whom is my ex, therefore my cats are my company. They bring me joy and laughter and I would be lost without them. They actually give me a reason to get up when all I want to do is go to sleep forever when the pain is too bad.
I came across a saying yesterday which sums me up - 'I used to run with the hare but now I envy the tortoise'
I have to look for a new carer but how do I choose? I don't like having strangers in the house and being disabled with very poor mobility and poor balance I am scared that someone might hurt me.
You can probably tell that I am very down at the moment. All I want is to be happy again and for my pain to reduce to an acceptable level.
I am sorry to moan so much but I was asked to write how Fibro, CFS etc affects my everyday life and unfortunately, this is how at the moment.
If anyone can help me see that things will get better or have any suggestions on how I can improve my situation I would be eternally grateful.
Thank you for taking the time to read this post.
PS How do I start a blog on here? I've found the page but don't know how to access the page which will allow me to write. All help greatly appreciated.
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Old 02-09-2014, 02:45 PM #2
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City: *****
State: Pennsylvania
Country: US
Diagnosed: 01/1995
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
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Default Re: Hello - new today

Shell63,
My heart goes out to you in your having to manage alone with your severe disabilities. As I was reading your post two things came to mind. As for your beautiful cats could you have your ex buy you a litter pan and a box of cat litter. then on the days your wanting or needing to sleep the cats could use the litter box for their potty time, thus your windows would not be open while you sleep.

Could you have dead-bolt locks put on your doors that go out of your apartment? That way no one could break in while you sleep. Do you have any other friends who could help you with the cooking and cleaning? Does your area have any meals-on-wheels programs where churchs or others provide hot meals to shut-in people? Could you use a wheelchair to get around parts of your apartment to save the stress on your legs?
Or could you use a micro-wave to heat meals instead of using the stove?

As for the Blog, go up to the left hand corner of the page where it says "Blog." Click on this and several choices will appear. Click on My Blog.
Then once the page opens on the left hand side of the page look for "Post to my blog." Click on this and the page to post your first entry will appear. Then to add more postings do the same steps again.

By the way welcome to the forum. I hope you will gain some knowledge and coping skills, and some ideas that will help make you feel less afraid and less alone. Feel free to ask questions and share in with other posts and members.
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Let not your heart be troubled, much better days lie ahead for all of us.
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