I know it sounds needy, but Ive run out of options.
I am a single man, no family, I am unable to work for medical reasons and almost unable to walk. I could really do with some help, advice, support on living with pain and generally coping as well as benefits, assistance etc. I have tried to cope but everything seems to pile on all the time and I dont know where to turn. My medical problems stem from a rare skin condition and there are no support groups, charities etc that I can turn to.
Jaycee73
I would be interested in knowing what Skin Disease you have as I have an autoimmune disease that I with am having trouble with.
Hello JayCee73,
I was distressed to read your post.
First of all, I'd like to commend you for taking a chance to reach out to others for help. It's always scary and the difficult bit is waiting for a response - any response really but something that will help you to assess, accept and challenge your situation.
To be single with no family to turn to sounds like the worst possible thing in the world for people like us struggling with pain - no matter what condition, ailment, accident or procedures have brought it on.
If you've been struggling with this condition for six years, I'm assuming that you have had some measure of support from health professionals and others over the years - has this come to an end or are you feeling too depressed to follow things up?
Can I also assume that you are claiming the relevant disability allowances and are being supported with your housing?
Have you attended any groups in the past or is there one you can be referred to by your doctor? If you're able to get on line, it might be useful to check out any local groups that might be of help.
Are you religious? Many find that attending prayer groups or other services very helpful.
Your post sounds like you would benefit from some ongoing counselling and perhaps, attending a pain management group to support you with practicing mindfulness.
Last but not least, you could try keeping a Gratitude Journal - making sure that you write down each day at least one thing that you're grateful for. I find that remind myself of how fortunate I am to live in a country that tries to support those less fortunate is always a plus - in comparison to some of the countries I've visited - yes, including America.
I hope this is helpful. You don't sound needy - you sound ready to participate.
Try to stay positive and keep posting.
Thankyou for your reply.
Over the years I have had support from health professionals, each dealing in their own area and trying to help but overall they tend to fail and seem keen to pass me onto someone else, some of these loops I have been through 6 or 7 times with the same result. I do struggle with depression and do have difficulty following things up now and have become tired of the struggle. I do have access to medications still. I do get disability allowance but have recently had other benefits stopped because I had to move out of my own house which didnt have a down stairs toilet and now live with a friend. So expenses are up, income is down. I would really love to find a pain management group local to me that I could attend but havent been able to do so. I am in Northampton and although ive searched online, I havent found anything except references to support that closed years ago. Im not a religious person but appreciate the suggestion.
I'm really pleased that you've already taken some of the steps that I mentioned and you have a friend you are able to stay with - despite the costs.
I was wondering if you remember who you were, I mean in terms of your likes, dislikes, passions, interests etc. before you became the person you now are - the one who defines himself as 'Single, no family, rare skin condition for the last six years?'
It's probably time to Revisit the old you to explore which aspects of your life you can regain, which passions you can feasibly re-ignite - basically anything you remember enjoying that does not negatively impact on your present condition.
You could take a short course at an Adult Learning class, you could do an online course in a subject close to your heart - anything that will absorb you and help you to briefly forget about how difficult things are for you right now.
You posted - so you're ready! Don't let your disability win. All of us on this forum want to be supportive so Think laterally, think positively, explore all your options and LIVE.
Thankyou those are great ideas. I am indeed a different person, it is difficult to remember who I was, that person was healthy, employed, fit, outgoing and had a good happy life. I do feel that all of that has changed beyond my abililty to control it.
Doing an online course is a great idea, when I am able to afford it I hope to do that sort of thing, I certainly have the time to do it but financially I am stuck at the moment. Thankyou for the suggestions, I will look into it further.
hello JayCee 73, so sorry to hear of your problems and the fact that you seem so isolated. I am sorry that the council did not help you find somewhere with a downstairs toilet or fir one for you. It is their 'duty of care'.
I used to live in northampton and loved it still visit when I can.By the way you don't have to be religious to get help.counselling and maybe encourgement from a church. There are very kind people who will not try to convert you. If you wish I can give you an introduction to them.
Pat
Thankyou for the offer, my attitude towards things like that is that it 'cant hurt to try' and an introduction would be very welcome. thankyou.
Unfortunately as I own my own home which was unsuitable for adaptations, I had no choice but to move out. The council did look into making adaptations but there was no suitable space for putting in downstairs facilities.Because I was honest with the DWP and told them of the situation, they stopped my benefits because the house was then considered an asset and so puts me over the limit for any means tested benefit. My hope is that someday I will be healthy enough to move back into my own house and so I really do not want to sell it, besides it would leave me in a negative equity situation. This means I now pay a mortgage, rent, expenses etc and my only income was DLA. I have had to rent out my house in order to cover the mortgage on it.
Can you tell me which area you live in in Northampton and I will find the nearest contact for you.
Pat
I am in Duston. Thankyou
Morning JayCee 73, leave it with me for a few days and I will try and find some sort of help. Meanwhile have you been to the Advice Bureau in town. They will make sure you get all your benefits etc.
Pat
Back in my earlier days as a medical social worker, there were specialist skin hospitals where people with rare or overwhelming skin conditions were admitted from time to time. We as social workers offered support to patients, many of whom were isolated owing to the appearance of their skin. The patients developed a camaraderie on the wards which was as helpful as any medical treatment. Although most of these small hospitals are now closed, there are still dermatology departments in most large hospitals. Are you an out-patient at one of them? I'm fairly sure you will be able to access emotional support via this route. Please try. Best wishes.
Hi. Thanks for the comment. I am an out patient at a dermatology centre, I have asked them about emotional support and they are unable to help. For while I was able to access a psychologist but that service was closed and is now unavailable. I have asked my GP who referred me to the pain clinic of my hospital however they only deal with the treatment of the pain and cannot help with the other conditions caused by it. Im afraid that ive been passed from one doctor to the next and each one is only interested in dealing with their speciality, they have no interest in helping me as a person. Ive had dermatologists, physio, orthopedics, pain control, orthotics, surgery and others too numerous to mention. Is there a way to contact this emotional support you mentioned directy?
Jaycee, I was referring to a time now gone and expressing my sadness that services fail to acknowledge the emotional impact of skin problems. Even Detmatology Consultants had to have this pointed out to them - this was the Skin Hospital in Manchester in the 1980s. I'm surprised that the Pain Centre you attend foes not provide psychology. The one at Salford Royal does. Where are you based ?
Hello BOB here
You say you are having problems with your joints and have a skin condition this uncommon. Could this condition be psoriasis if so I feel I can most probably help here, could you confirm this please as it would be a waste of time explaining things to you and where to get help.
There are certain things that would be effected in the first instance, you will be suffering small joint arthritis, also problems with hips, knees, shoulders fingers wrist etc Not all of these will be active at any one time. You will have period of flare and other possible problems, the other are possible head aches and extremely tirdness.
BOB
Hi Bob. Im not sure what makes you think I have joint problems, although I do have walking problems caused directly by the pain and a deformation that has formed over time from me trying to avoid causing more pain. Its definitely not psoriasis. I do not have the joint problems that you describe.
Hell BOB here
Sorry to assume. It was the the skin problem you mentioned. The two together is atypical of that condition
All the best
BOB
I really hope that you find the support you are looking for soon, there is nothing worse than feeling lonely and forgotten especially when in chronic pain.
Talk to your gp about support groups local to you, you may not find one for your specific illness but I am sure there will be those dealing with skin complaints and pain.
This is a good site to belong to, I have had so much advice and support from people experiencing similar problems as myself and it is always good to know that there are others out there who understand. The most important thing to remember is you are not alone and help is out there you just have to reach out and grab it.
nutty
Thankyou for your kind words.
I have been looking for support groups for a while but been unable to find any. There is a group on facebook for people suffering from the same condition, there arent many people who have the condition and they are spread all over the world , so its ok for sharing info but limited in terms of the sort of support that can be provided. I am hoping that I can find support in dealing specifically with the problems caused by the pain and also with the painkillers, im sure im not alone in feeling that sometimes the painkillers can cause problems of their own.
It's very hard to have such severe problems and cope alone, you must have used a lot of energy managing over the years and it's not surprising that you are now exhausted and short of personal resources. Coping with pain is hard at the best of times, a specialist Pain Management Clinic should offer multi-disciplinary support from doctors, nurses, physios etc. Entry is via your GP. If you have problems getting your GP to take note, can I suggest that you write a letter, use bullet points to make your points and keep it concise (they're often not good readers too busy). Also ask for a referral back to the Dermatology Specialists (they make work with pain consultants too). Whilst there may not be any specialist groups for your condition there are support groups for people with chronic illnesses that are run by local health areas (not sure how NHS changes have affected these). Try looking up your local area on line and then try the DoH web site also local consultants that you have contact with. I've included 2 web sites that may help, one on pain and one for depression/anxiety, with such a difficult set of problems you may feel some psychological help appropriate. It's a matter of finding the right one for you.
Action on Pain (AOP)
AOP is a national charity providing support for people affected by chronic pain, either as a sufferer or a carer/relative.
Telephone: 01760 725993
Helpline: 0845 603 1593 Email: info@action-on-pain.co.uk There's a website
Free Online Support Group - turn2me.org
turn2me.org/OnlineSupportGr...
Join our free Online Support Groups with our Professional Facilitators
1:1 Online Counselling - Free Group Support
I wish you well and hope that you get the support that you need.
Lil1
Thankyou
Those are great links. the second one doesnt work fully but I can get there from turn2me.org. The website for the other group is action-on-pain.co.uk/ I will be contacting them both to see what they are able to suggest. I know that talking to someone about how I feel is important and used to have access to clinical psychology, I do have access to a psychologist but they are not clinical, more focussed on bereavement.
I'm pleased you think you might find these useful, however I note that you state that there are no pain clinics in your area. St Thomas' Hospital in London runs a four week residence based course, accommodation is provided at the hospital. This is a national service and takes patients from all over the country. It is well thought of by professionals and clients. The unit and the course are called 'Input'. Look it up online and start badgering your GP for a referral. Good luck.
Thankyou. I will look into it. Do you have personal experience of St Thomas's? What sort of cases do they deal with? Is it something that a GP can refer to or does it need to be a specialist? Is it an NHS service?
I do have experience of this yes although I did not do the four week course. My GP referred me. It is most definitely NHS. It is a multi disciplinary programme with nurses, physios, psychologists, occupational therapies and consultants. The staff are compassionate. I would highly recommend it.
This is a really great site for support. Please do keep posting here, about how you feel, your needs etc. sometimes there's a jokey thread too which is always nice! Keep in contact. You are not alone, and even though we all have different conditions we get a lot of support from each other as we are all in chronic pain to one level or another. Take care.
Thankyou for the encouragement. I find it very difficult to write about how I feel and about how I have problems coping, sometimes because its difficult to find the right words to describe how I feel and sometimes I dont understand how I am feeling and sometimes I feel so pathetic like I am moaning about things that other people cope with perfectly well. I have had a very difficult time going from fit and active and happy to disabled and inactive and suffering. I have taken a lot of knocks on the way and maybe it is naive to think that for example, a hospital who caused a problem would offer support in dealing with it. I just dont know which way to turn a lot of the time and often feel that there are so many things going on that I do not know where to start in dealing with it all.
Hi Jaycee 73 so sorry to hear how you feel, are you still being treated as it should be curable according to what I have read, also the pain clinic or your GP should refer you to a local pain management course where you would not only be taught ways of managing your pain but also meet people with similar problems, also I agree that your local housing people should either have tried to sort you out with housing with a downstairs loo so I would still persue that route unless you prefer to live with your friend. I really hope you find support on this site, I know I have.
I wish you well VIv
Thankyou. The condition is treatable but not curable and unfortunately the treatment itself causes other problems ranging from worsening of the condition to pneumonia!! I have asked about pain management courses but there is nothing like that local to me and no plans to run anything of that kind. There are references to support on my local hospital website but these are old services which have since been cancelled.
My local council investigated the possibility of downstairs facilities but in a small 2 bed house, mid terrace, there was nowhere suitable for putting in any facility and so they were unable to help.
Hello Jaycee 73
Pat here. I am the outsider as a carer for chronic pain sufferer but always try to add a slightly different view.
There are support groups but maybe not for your specific condition. Not knowing where you live i can't check but if you are interested just let me know.
The benefits system is undergoing a radical reform, no not reform cut, but you are still entitled to certain ones. Of course you have to meet the criteria. Have you tried your local CAB, local authority should hve a housing officer. But as i said let me know where you are and I can probably put you in touch.
But as vivikin says you may like livng with your friend.
Pain clinics are excellent and I am always singing threir praises. They don't just pump you full of drugs - they do a pain management which does what it says on the tin. teaches you how to manage your pain.
You will always find a listening ear and helping hand on this page.
Good Luck an maybe hear from ypu.
Pat x
Thankyou. I live in Northampton
I have tried both CAB and council and although everyone is sympathetic, the means testing system does mean that I cannot both own a house I dont live in AND claim benefits. It doesnt matter about the financial situation and the fact that id be poorer if I sold the house rather than keep it, it is now classed as an asset and therefore, even though I am unable to live there currently, it means I am not elligible for benefits. The lady at the DWP was very apologetic but said that they cannot consider personal situations for eligibility and they do understand that living away from the house I am worse off but they are unable to give me any financial support. However if I was forced to sell my house and go into debt, they would then be able to help me!! How silly is that??
It does seem that having paid my taxes etc as much as I could for as long as I could, having saved up for my own house and then always being honest with people like the DWP has actually made me a lot worse off. I recently found out that if id told the DWP that my house was 'awaiting decorating' rather than telling them it was sitting empty, id still be getting benefits!!
It is not bad living with a friend, he earns too much to be able to claim carers allowance and is self employed so would have difficulty getting the benefit anyway. I have attended my pain clinic for treatments, mostly spinal injections and nerve infections but have never had any sort of pain management help, I have asked them about it but they do not seem to offer that sort of service. I am willing to do whatever it takes to learn to manage my pain better, I have been trying for years to do it, but im afraid that my ability to cope is failing and I am finding more and more that things are getting me down.
Something doesn't add up here with benefits. it doesn't matter how much your friend earns in order to get carers alowance. If he is claiming a higher benefir thatn the £55+ a week then he can;tclaim for you. his needs investigating. Not your friend.
You should be able to claim DLA which is an in or out of wrok benefit to meet the extra costs of your disability. Als if you can't work you should be able to get ESA. Your house has nothing to do with these benefits. maybe housing benefit but none of the others. Sounds like you have been given bad advice. Can you sen me your email through message? If you would like me to help that is! Don't want to be pushy.
As for your pain clinic not oering you any sort of management that is appalling. Even giving you some leaflets to read would have been better than nothing.
So up to you my friend. Happy to do what i can but seriously you need mre than you are being fobbed off with.
Pat x
Thankyou Pat.
Il try and work out how to send you my email address. I maybe wasnt very clear. I do already get DLA, that is the only benefit I get. I used to get ESA but because I had to move out of my house, that house is now considered to be a capital asset and if you have asset over £16k you cannot claim ESA. So, I cant sell the house because id be worse off and owning it makes me ineligible for ESA because I cannot live there. The carers allowance does not apply because although I get higher rate mobility, I get lower level of care and it needs higher care rate in order to claim carers allowance. My carer is not getting any benefits of any kind, but because he earns over £100 a week, we have been told he is not eligible to claim carers allowance. The pain clinic has done worse than just not offering management assistance, sometimes it is a real problem just getting an appointment so dont even get me started on that!!! I know I need assistance with management rather than treatment and thats what prompted me to look for a site like this to start with.
Hi
Is your friend in a caring role where you are concerned? If so then there is possibly a carer's allowance for him.
If you move back into your own house then you could get a portable loo which can be emptied by a carer.
Contact "Carers Together"
01794 519495
They should be able to explore some of the options available and help you contact people who you need to speak to.
Medical Route offers treatments it does not offer management skills in dealing with your health disibility. This you will have to investigate yourself.
Management skills start with observing yourself. Medication and Mindfulness help do this. There should be BUddhist groups in your area who can help you with this.
The indications you give is that you are suffering from muscle problems. Not necessarily a disease just side effects of the problems you have. To help you move you are going to need to see specialists that our outside the NHS like Alexander Technique teachers.
They will not cure the problem you have, but by getting the muscles to move more freely you will find things will be easier.
Thankyou for your suggestions.
My friend is effectively a carer, but is self employed and earns just over the threshold to be inelligible for carers allowance, personally, I don not see how carers allowance should be means tested, but I dont make the rules. A carer is still a carer no matter what job they do and how much they earn. The portable loo is something the council suggested, however there was nowhere to put it, it cant be located in a kitchen and the only other room downstairs was the living room which they said wasnt big enough for a portable toilet to be safe in, ie it would get in the way when moving through the room.
I have tried to investigate pain management skills and have read about mindfullness, this seems to require an amount of practice and training and although I understand the principal, I would definately need to be shown how to do it in practice. I will attempt to find out more about local Buddhists, thankyou for that suggestion.
The problems that I suffer from stem from an ulcerative condition which over the years has left me unable to move my leg/ankle and the muscles have atrophied and wasted and no longer work properly, my ankle is stuck in an extended position. I have been to physio but they discharged me stating that they would be unable to assist until the pain was properly dealt with since the pain is restricting movement a lot. I do not know about specialists outside of the NHS and ive never heard of Alexander technique. Unfortunately I am unable to afford any sort of private treatment. I agree that getting the muscles to work properly is important and will make things easier, moving calf muscles does move/stretch the skin on my leg and unfortunately that sort of movement is unbearably painful. Even for previous physio treatment I had to consume a lot of painkillers before each treatment and this is one of the reasons that I was discharged. Physio passed me to Orthopedics who were also unable to help because of the underlying condition and so they also discharged me.
Physio have very little understanding of the way muscles work. They are often a case of one size fits all.
You have to get the muscles to work. Muscles act as blood pumps and by moving they pump blood though them and this way they move out waste products and bring in nutrients.
If the muscles just beneath the skin are in permanant contraction then the skin will not get the nutrients it needs and will ulcerate.
It is a fact of life that some treatments you will need to pay for and DLA is available for this.
Start on moving the leg, ankle and knee no more than a centimeter back and forth. You need to do this with no pain killers. Pain killers will mask the muscle feeback you need to be aware off.
You will need to do this in the morning, after lunch and in the evening. It will hurt a lot at first. You need to fully concentrate on what you are doing. You will need to experiment does it help if the leg is warm or cold. Does an electric blanket help?
It will take at least a month of doing this before things will move more freely.
You will need someone to give you feedback because you you can always see the plank in someelse's eye but never the speck of dust in your own.
I cannot say more than this because I have to apply general terms because I am unable to see your condition.
Hope this helps
Sorry to hear your story. I've had chronic pain for 8 years but am currently doing very well. There have been plenty of times when I couldn't ever see any respite but I have got to this point, and I hope that every chronic pain sufferer can get there too.
Back in those dark days I kept a diary so there was somewhere to write down what I was feeling. If I couldn't write it I drew a picture or just a load of scribble which was how it all felt. It was better than keeping it in my head, and it sometimes helped at medical appointments because I could articulate my feelings having written them down first.
I can also recommend a personal "Pain First Aid Kit". This isn't a box full of tablets, it's a list of things that make you feel better, or things that make you feel a bit more in control of your situation. So if one of the things that helps is having a cup of tea, that goes on the list. If taking some medication helps, write that down too, possibly posting something on this website could be another thing that helps. The whole point is that you must WRITE IT DOWN and when you feel swamped and in despair you get it out and do all the things on that list. If you don't write it down you won't do them!
Being able to do something that is pleasant or distracting, even if it doesn't remove the pain, is a positive thing.
Thankyou for the suggestions. I do try to distract myself when I can, but of course that isnt always possible and I find bedtimes amongst the most difficult for that reason. I do try to distract myself with various things but the distractions in themselves almost seem like I am wasting my time and not doing anything constructive but trying to do constructive things during those periods is difficult because it is difficult to concentrate, it is a bit of a no-win situation. I have attempted to make notes of my feelings of despair and depression in the past but gave it up when I started to see it as a self-pity exercise. Nobody else was interested in how I felt and so it really felt like an exercise in self pity and wallowing in unwelcome feelings. Unfortunately I have tried to find things that could make me feel a bit more in control of my situation, but have been unable to find any that can really control it. They all feel like I am delaying the inevitable. Sorry if that sounds negative but thats why I am here, to see if I can change that.
Many posters on here Jaycee, indicate the power of the mind. Don't overlook it, it's the most powerful instrument we own.
I agree completely, it is indeed the most powerful. I just need to learn how to use it properly. Although I have been able to train myself to a certain point to deal with things, I am fast coming to the end of my ability. In some ways I wish I hadnt tried. It would seem that a lot of 'professionals' are of the opinion that I have managed this long without help and should be able to continue the same way. Just tryin gto find / ask for the support that I need is a skill that I do not seem to have.
There have been some good suggestions on here, in respect to tackling medics, there was the suggestion you write down your main issues using bullet points so as not to overwhelm the doc. Remember they are only human, not gods, even if some of them might believe so. They are obligated to help you and most want to. Sometimes we have to be explicit with them as they don't know what to do to help. They deserve respect only in as much as anyone else does, you included. We have all been at your low ebb Jay and the opposite of ebb is flow. Many here can attest to the fact that the tide does turn, it really does. I never thought it would for me and Teadrinker has posted the same. Zanna and Johnsmith and many others are examples of persistent trial and error over years and years. Sometimes we slip back for long periods but remembering that there has been respite, gives us strength to cope with the bad times.
Pain Sucks!!
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