Alone and scared

Stayfocused

Hi everyone,
Sorry I've not posted for a while been at a bit of a loss. Trying to just get on with my life but deep down really struggling with pain. I struggled on untill about two weeks ago when I couldn't get out of bed I was in that much pain. I just sat and cried and admitted defeat, my ole faithful black lab came and sat next to me as she so often does when I cry.
Ive recently moved my care to another trust as I wasn't happy about my management and evidently I was right to do so. I have had this pain in my hip since January 2011 and it has taken me moving to another trust to actually get something done about it.
To cut a very long story short I had my 3rd steroid injection into my right hip on Tuesday of last week and rested solid for 3 days post injection. The two previous injections were depo's which didn't work.
I cannot fault my current consultant and nursing team they are the best. However 6 days post injection I'm still in pain, not as bad in fact nowhere near as bad but it's still not right.
There is a few of reasons why I wrote this post...
The first being will this pain ever go away to a level where I can function and go back to work without being in agony and just making do of a bad situation or is this it will I forever have this pain and instability in my hip
The other reason is, I've had MRI, X-rays and nothing shows up on them (however the MRI was before this really big flare up). Is it in my mind...it certainly doesn't feel this way when I'm in agony, but the mind can play some amazing tricks.
And my third and perhaps most vital reason is...I work as a nurse in quite a senior position, I love my job even though it is stressful and hard work. I have good days and bad days like everyone. I manage at work to varying degrees...somedays I'm really good and I'm a super nurse and other days I might well as not be there due to the amount of pain I'm in.
I have had time off work over the 10 years I've been there but work have been really supportive. But I worry that due to my sickness record and the way the NHS is at the moment that one day they'll just get rid of me. I know they can't just get rid of me, I'll be redeployed to another area of the trust but I've worked hard to get where I am in nursing now and I can't just let go of a dream and something I love doing.
If I end up losing my job I'll lose everything my house, my car and the will to carry on.
What do I do carry on untill I can't function or walk and end up in a wheelchair. Or admit defeat and throw the towel in.

One last question...does anyone else manage arthritis alone?? I have a very supportive family...mum, dad and sisters but I'm recently divorced and have no friends. When I was married I spent ecery waking moment with my husband and when he went to work I eons clean the house and await his return. I wouldn't go out with my friends as I'd rather spend time with my husband. Big mistake, I've lost my friends and am never asked to go out with them anymore which in some ways is good cause I'd probably be too tired or in too much pain to go out but it'd be nice to have the opportunity. Since my husband left I moved to another county and although I'm near my family I have nothing else and no one else to spend time with. I am alone and at 34 this is not the way I imaginedy life would be.

Any comments would be really appreciated, so at least for today I don't feel so alone x

dreamdaisy

Hello Stayfocused, oh my word you poor, poor thing, you do sound down. I have never had any joy from steroid injections but if the pain has lessened - albeit by not much - that is acutally a good thing and you never know, a little more benefit may yet be in the pipeline. There is nothing more isolating than being in constant pain - I too have lost friends along the way as there are only so many times you can promise to turn up to something then don't. I am fortunate in that I am still happily married but even that isn't always the comfort it could be - we've just passed a very tense week-end together and I am so pleased he's at work today. I know, I know - I'm an ungrateful cow.

I work but being self-employed I find that I have a very understanding boss. I cannot help on the work-front but I do think that if you posted again on the LWA part of the forum (Living With Arthritis) you will receive more answers. People will only look at this bit for work-related stuff - and yes your post has some of that in it - but they may not realise just how down you are. We are a caring bunch on here and I am sure that others will post to try to support. Have you thought about ringing the helpline here? They are very good at listening to people's thoughts, fears and tears.

I have been in constant pain for fifteen years, I now have 38 affected joints (I have two forms of arthritis) and use crutches or a four-wheeled rollator to get about. I never thought that my life would turn out like this but it has and all I can do is get on with it. I do what I can and ignore what I can't until I can find someone else to do it for me. Work is a struggle (I coach dyslexics) but I welcome the diversion it offers. I am lucky in that I can work sitting down but I guess much of your work involves standing and walking - not easy with a hurty hip. A stick may well help - you would hold it on the opposite side to the painful one and they can take a deal of strain off the painful bit. Sticks also indicate that one is in trouble and people then tend to be a little more understanding.

Right, I've rambled on enough and I need a kip. (I'm recovering from a nasty cold/chest infection type-thing and I'm feeling ropey.) Take care, I am thinking of you and I hope you feel a little better soon. DD

elnafinn

Aw, you poor love. That is a message from the heart. I am wondering if you did feel one iota better for writing down how you felt/feel as that can be therapeutic, although not sure why.

Isn't there anyone of your friends that you used to have, that you could contact? I had to persevere with a particular friend when I did not hear from her with any news for a very long time and in the end she told me that she had gone through a fairly bitter divorce. Although we do not live near each other, we meet up occasionally and talk on the phone/email every now and again. I am glad that I did keep on, every now and again letting her know I had not forgotten her.We only really need one good friend even if they do not live close. Is there just one person you could get in touch with?

First of all, the pain is not in your head, so please do not think that or let anyone suggest that to you either. Pain is pain, there is no getting away from that. I cannot say if the pain will become manageable in time, perhaps you can discuss that with your gp or medical team that look after you. You do have to fight for attention sometimes otherwise you will be left to get on with it. Keep banging on the door to let the medics know how it is for you.

Try not to think too far ahead, difficult though that is, none of us know what the future holds for each and every one of us and this is wasted energy lost worrying too much about it all the time.

You are blessed to have a supportive family, some do not have that.

Do keep in touch, I wish I could really help you, but it is good to talk.

Gentle hugs
Elna x

dibdab

Oh dear, sending you gentle hugs and positive thoughts. With the lovely folks on here you'll always find understanding and support so don't worry about unloading-we all have our times to do that.
I'd like to offer a bit of hope for the injection thing- like you I had terrible hip pain and had bilateral steroid injections followed by 3 days in bed- at the time I wasn't sure it had helped much, but about 2 weeks later I realised that I had been able to go to bed without pain relief for the 1st time in months- so hopefully as the steroid works it will get better over the next few weeks.
This relentless pain is certainly not in your head, and I'm sure it pays to be honest with your colleagues, you work in a caring profession and there will be people around you who will try to understand and support you, but if they don't know how much you're struggling how can they give you the support you need? One thing that I have had to learn over the past few years is that unless I swallow my pride and ask for help no one understands how tough everyday stuff can be.
Your employers have a responsibility to make reasonable adjustments if you have RA, but they won't if they don't know. It's your right to ask for help.
I really hope things pick up for you soon. Take care.

Deb x

Stayfocused

Thank you all for your kind words and support xx

Heather65

Hi stayfocused hope your feeling a bit better today

nicetomeetu

Hi,

Hope you had a better day today.

You asked if any of us manage with arthritis on our own. I do. I have been on my own for 15 years now. Not only that, I don't have a supportive family, even though they all live near me. My sisters socialise with each other but I am the last to know about everything. I have some good friends, but they are all married and so never like to go out without their spouses and I go out with them once in a while for a meal if one of us has a birthday.

My children keep me going and as I have recently discovered, the lovely kind, caring people on this website, who though suffering their own pain, give time and caring.

xx

numptynora

Hello stayfocused,

Ditto every thing that nicetomeetu said, I'm on my own too, I have one friend, we grew up together so that's about 55yrs her and my sister (she lives far away) are the only ones I can talk to and of course the wonderful people on here. Keep your chin up chooch.

Numps xx

kentishlady

Hi everyone. I am on my own too. My Son lives about 5 miles away and I see and talk to him regularly, couldn't wish for a better Son, he is always doing something for me. I also have a daughter who is married with a small toddler. They live about 45 minutes away from me, by car, but I rarely see them (long saga which is down to the divorce situation many years ago and for which my daughter still blames me although it was her Father who went off to work abroad and met someone else leaving us all to 'get on with it'. She and my Son are not particularly close either and our meetings/visits are always very brief. I keep making the effort as I want to be able to see my little grandson. I also have a fantastic friend who lives next door to me (she is also on her own and has 2 Sons) and I do go out with her occasionally and she and my other friends do realise that I cannot do much walking because of the constant back pain (I have OA). I love going out but by the time I get home (usually in agony), I do begin to wonder whether it is worth the effort. I do have some hobbies, mostly handicrafts, and I find that they help. I should love to have a dog (we lost our lovely Golden Retriever many years ago) but I know that it would not be fair as I couldn't take it out for walks - can hardly take myself!!! I find that if I can keep busy I don't feel too bad but some days, as you all know, it all becomes a bit much. Like many of you, I have learnt to do a little at a time and by doing that I find I can cope, more or less. This forum is a wonderful way of keeping in touch with others who understand the problems we all face. Thinking of you all. Beryl

WoodyEngland

Hope your feeling a little better today I know how you feel on the Job situation I too have had problems in work but unfortunately I have had to leave my possition in the army due to my poorly feet and having arthritis in my ankles it felt like a rug been pulled from beneith me which I had no control over my my job was my life and I loved every minuite of it so having to face up to not be able to do it any more is a very difficult and painfull pill to swallow which I've in the past tried to ignore deny in my head and just ignore. I've also handsome pretty miserable painfull days where I've thought I can't handle this pain anymore and have been crumpled up on the floor holding my feet and have felt pretty list on the docs front where I seem to be getting know where. I'm trying to stay positive about all this and I've created my own action plan in my head to get me where I want to be and have changed jobs and am demanding answers from my gp and chasing up my specialist appointments as they don't see to give a dam I'm in the process of emigrating to Australia as I know my feet will be a lot better in a dry climate so I'm focussing on that and blocking out my negitivity feelings I have also taken up reading books which interest me to take my mind of my pain and and a few other hobbies I think a support group may help you in the local area if you are in a possition to get out give your chase up your doctor too if the pain meds are not working you need a plan of action

wall1409

I know how you feel regarding job, house etc as we have 3 morgages. My husband had a house when we met but due to this financial climate he is in negative equity, and its a small 2 bed. I had a 3 bed but on a pedestrain walk way and he has a motorbike and wasnt happy renting a council garage to store it in. I went to see a financial advisor who said I could rent my home buy a second and sell my husbands so we rented my home I used some of the equity from that house to purchase the one we live in now but my husbands house has not sold 2 yrs on so we currently have 2 interest only morgages and a repayment as my previous home is a buy to let morgage and out current home is interest only due to my wage as the whole idea was for my husband to sell his house and come on a joint repayment morgage with our current home, so if I lose my job, we lose everything. Try thinking this way though, anything could happen, you could win the lotto, the world could end, and to be honest, if we lost our jobs, our homes we need to live somewhere with our condition , worrying only makes things worse hun and wont help your condition. There is always a silver lining hun, even if I had to live in a caravan as long as I am alive so what, life's way too short.

Wendy xx