I don't see many people as I live alone in a strange town living the life of a hermit. I have a few friends I see from time to time, I have to be almost at deaths door to not hear the "Oh your looking so well" I may well look well but inside I am falling apart. I am lucky to have one really great friend who lives far from me but we speak on the phone 3/4 times a week and she comes over to see her family and me. I also go over to stay with her and her husband and that's a lovely break/holiday for me. So we see each other a few times a year.
I get so down sometimes because I cant do the things that were once simple to do. Dishes for example they hurt my hands I have nerve damage in my right arm which freezes my hand and fingers so touching things causes pain. Both my shoulders are crumbling I've had three operations on my left shoulder and they tend to give me relief for a few months then the crumbling starts again.. so that makes hovering, bed changing ,washing hanging and bin emptying a challenge. It takes me ages to do these things however when I do manage them its a huge achievement for me. I plod on and let my body/energy levels decide how much or little I can do. I need someone to come in and do the things I struggle with but I have no idea about how to get this help.. I think I need a care manager to help me get this help.
I suffer from various problems I have Severe COPD, Systemic Sclerosis, Raynaud's, Scleroderma, to name some of them they are all invisible to the world. I dread the winter coming I was admitted to hospital by ambulance in Feb of 2013 with Double Pneumonia kept in for two weeks as I fell out of bed hence the nerve damage in my right hand.
Ironically ten months later I was at another hospital to get the dressings off my arm and the nurse suggested I go to see the duty doctor in A&E Oh I knew I wasn't well but I agreed to see the doctor guess what I was admitted again this time it was respiratory failure this was Christmas Eve...........I had company at least. Oh my I have off loaded loads of my woes ...I love this group it makes me feel I am not alone
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JustSandra
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Hi Sharon, I am pleased you replied to my rant thank you so much, I do feel better I just get into a tizz sometimes. This is a great group such a shame we each have our own health issues. This getting old is no joke
Morning Sandra, i don't know what the time is where you live,but here in the UK it is 3 in the morning. Feel free to rant all you like that is why we are all here so we can get it off our chest and hopefully when we have off-loaded everything we feel lighter afterwards.It helps just knowing someone will reply. You certainly sound like you need dome help. Contact the NRAS team and ask them what help is available in your area. If you tell us where you live someone i know will have the answers for you to get extra help.
Hi Sandra I was sorry to read how unwell you are, you are doing right just pacing yourself with housework. Having one really good friend is lovely and sometimes that is all we need to get thru the day, having lots of people around does not guarantee you wont be lonely emotionally, its the quality of the friend or friends we have. wishing you well. trish
Hi Sandra,
You poor thing. How horrible to be experiencing such difficulties alone. I hate to think of you feeling so lonely.
Sylvi gave some good advice about contacting NRAS. They will be able to let you know where to go to get some help. NRAS also have support groups who meet up every month and there may be a local charity transport group in your area which could help you get to the meetings.
Are you in receipt of DLA? If not then apply to get some extra financial help to pay for someone to come in and clean for you.
Your GP could also refer you to the community occupational therapist to come to your home and do an assessment of your needs. When you go to your GP, take a copy of this post for him/her to read so that they know the impact this is having on your daily life.
Your local library should have lists of groups, organisations etc in your area. I'm just about to join my local U3A group which has a whole list of different classes you can join in with from local history to learning to play recorders and when I moved into a strange area for a year I met some lovely people through a reading group.
As others have said, you are very welcome to contact NRAS. The helpline is available Mon-Fri, 9.30-4.30 on 0800 298 7650.
I am pleased you have found this forum, as it can be particularly helpful for people who feel alone or feel that they just don't know anyone with RA. As Judy mentioned, we have NRAS groups across the UK, so it might be worth seeing if there are any in your area:
Judy also makes a good point about benefits. The DLA that she mentioned has now been replaced by something called PIP (Personal Independence Payments) for new claimants, so if you are not claiming PIP or DLA you might find our guide on this and our general guide to benefits helpful. Both can be downloaded or read here (click 'view all publications):
Contacting your GP to see what help might be available in your area is also a very good idea, and perhaps contacting your local social services might be useful.
I hope people's suggestions and support and the above links will be helpful to you.
Hello, I'm glad you've got a few things off your chest, yes it's good to share your woe's here because we all do it from time to time. |'ve just written a post myself about my legs not wanting to walk and had some valuable suggestions and shared experiences from lovely people on this site.
Oh how I recognise all your frustrations concerning the tasks you used to do without thinking about it, and now like me and many others too, you struggle just to empty the bin and make your bed. It is so frustrating not being agile like we once were, but I'm constantly trying to find easier ways to achieve my aims, and it sounds like you are trying to do the same.
Help with some of the heavier jobs in my home has been so precious over the past 18 months, I wouldn't part with my lovely Carolyn who comes in once a week and does wonderful things with my dusters, hoover and the mop and bucket. As a result I don't get as tired as I used to. So, I'm glad your thinking on those lines. It sounds like you could do with a chat with an occupational therapist through the social services, they can make suggestions to help you.
Also, you are obviously listening to your body and resting whenever you feel the need, that's really good, it took me quite a while to get my head around that one.
My you've been through a lot in the past year or so, but you are obviously a little fighter because you keep bouncing back It's great that you have such good friends and you get to chat a few times a week and get a break away from home.
I love the picture at the top of your blog, it tells me that you haven't lost your sense of humour and you love nice things. Take care of yourself. June xx
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It's great that you have such good friends and you get to chat a few times a week and get a break away from home.
Really tired of this constant horrible pain.
What to do? What to say?
Decisions Decisions, In a quandary as to what to do next
