Is it me?

This year I will be half a century plus five however in my mind and for my sanity I am thirty eight and three quarters. It is not just that separates me from others as I also have PN (peripheral neuropathy) in both legs and my left arm. But it's still not that there is something else. I have lived with HIV and AIDS for well over 20 years and I am told that my RA came about because of my HIV status.

I don't blab about my HIV status because I don't really want the whole world to know, it's a very private thing and that part of my body is in good order. It's the RA that is destroying my life. I have been on numerous RA regimes, Methotrexate 25mg weekly at the moment and I am waiting to start tocilizumab and there is great hope that this will be the drug for me however as we know it could take months for it to be effective. How will I last that long when I am unable to wash myself, dress, prepare a meal, shave, toilet myself and as for walking that went months ago. I have a wheelchair that can only be used outside because our apartment is too small to use it internally. I have a rollator and walking sticks but because my pain is so severe I no longer walk, I place feet, stagger, lean on walls to get me from bed room to toilet to lounge. Today at 1330h I am still sat on the side of my bed unable to move because I have an awful lot of pain in my shoulders, elbows and hands.

I am blessed to have a truly magnificent partner and it is him and him alone who provides me with care and it is getting harder for both of us. He is my all and without him I would be in a nursing home, and yes we have discussed that. What worries me the most is, will my RA have progressed so much that the new treatment might not be able to help it, will I ever get my early morning walk on the beach? What will I be like in a month's time, 2. 3 or 6? Even all the love in the world won't beat this but am I the only one who lives a life like mine.

19 Replies

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  • Having lived with HIV/Aids for all these years then you are a very special person and you will be able to continue to have the will to fight your RA and to walk along the beach.

    I see from your profile that you are living near Brighton. When your partner has a day of next why don't you take the wheelchair outside and let him push you along the beach front to Hove, it may give you the push in your mind to help you continue with your fight. Especially if it was a nice sunny day, to breathe the sea will help to calm you down and give joy.

    I know this is easier said than done, with all the complications of your pain etc. Either way your are worth it and I hope the wait for your new treatment is not too long coming. Take care. xxx

  • I wish it were as easy as 'getting my wheelchair outside and let him push' When I in the standing position I get a lot of pain in all of my joints and it can take up to 30 minutes for me to take no more than 10 steps so walking the length of our hallway is an exhausting and daunting prospect. It is not a view of the sea I want, I want to hold my partners hand, feel the sand beneath my feet and the laps of sea coming up to us and to feel the sea air as we walk. That simply request is as difficult as getting to the moon. One thing I do have is hope and one I will I hope take that walk hand in hand.

    Thank you for your response.

  • Wow you are truly having the worst of times, i am moved and humbled. I do hope you have a good Rheummy team you can talk to to see if there's anything they can do in the interim to help you mobilise better/ease the pain and that the new drugs deliver better prospects

    Your partner sounds wonderful...................

    Gentle hugs

    Ronnie xx

  • You are one brave & honest man. As for the new drug ...... have you asked your rheumy that one big question about your chances of walking along the beach? I know that biologics turn things around for many people and hope that you will be one of them.

    My RA is not as bad as yours but fear of the future lurks & I think it's behind my darkest moments even when I'm not consciously aware of it. And it is hard to live in & enjoy the present when you are restricted, uncomfortable & in pain but it's surely the best way though I've yet to get the hang of it.

    I'm glad that you are going to be starting the new drug, it's a glimmer of light & with luck it could be a lot more than that. I too have a wonderful partner & I worry about him sometimes & have stupid ideas about my illness being unfair on him. Half the problem, for me anyway, seems to be how to keep pointless worries at bay.

    Have you ever phoned the NRAS helpline? It's something I've put off even when feeling quite down but everyone says it's great. I'd imagine they'd be good people to discuss your new treatment with, as well as this forum of course.

    All the best to you, Luce xx

  • Luce, woolly,

    I am pleased that you too have what I call my 'Gift from God' my Angel. I know that I would be in either a nursing home or hospice. I have to balance my illnesses with life and I think you can guess that they fluctuate and it gets harder to remain in the now, the positive. I wish RA was my only problem but mine are multiple. My one brother, who did quaff in the very best of life died just before Christmas, riddled with cancer. He called me and told me that he could not face talking to or seeing our Mother one last time and now I have to help her breathe again but how hard is it to face losing both of your children so it's only when you scratch a surface do you truly see what lies behind it.

    I have a dream, my most favourite of lines and I thank Martin Luther King who has decidedly inspired my living for many years and I will go to Heaven with those words in mind. Deep down inside of me is a stronger man desperately fighting to keep strong who simply does not have the fullest of strength to come through.

    I won't be calling the NRAS helpline but thank you for telling me about it.

    Tomorrow is another day and if the sun shines I will too.

    Enjoy your evening and thank you for your kind words.

  • I do think you have it worse certainly worse than me, poor poor you. Like the others I loved your blog and it does make me appreciate what I can do as opposed to what I can't. I really hope that the new drug makes life so much better for you, and your partner.

  • You really have had a lot thrown at you haven't you...so feel v impressed that you are able to tell us a bit about your struggles. And so sad that you've lost your brother as well. I have heard remarkable stories of the difference different drugs can make, so I do hope Tocilizumab is the one that does it for and gives you back some of what you've lost. I think that stronger man is not as far from the surface as you might think, since you must be quite remarkable to deal with the day to day issues. All good wishes to you, and your partner. Polly

  • So sorry your suffering so badly, I'm in a similar place with my RA, I've been on 8 drugs for my RA and all have failed on me, I'm due to go in Wednesday to sort out the new drug they want me to start I'm not sure off the name off it but I've been told its only recently been approved for the UK and I will be the third person in the UK to start it.

    I'm hopeful it will work but I'm not building myself up to a big fall like I previously did with all the other treatments.

    I too am in a wheelchair, but I'm lucky that mines electric so I have a bit more independent I don't need someone else to push it, although I still need someone with me when out for safety reasons and if I need the toilet etc.

    I too can't wash, dress, cook a meal etc the list goes on, however I've been lucky in one sense to have a good rheumatology team, I've had occupational therapists who've made splints for my feet/ legs knee splints, hand, wrist and arm splints were also made for me, then they came to my home and did full assessments and helped out with loads off little gadgets like the grabber that helps me pick things up off the floor etc, I've had counselling which has been the biggest help in getting me out off the black hole of despair you sound like your in now, and made me realise I've still got some amazing things in life to make it worth living like my partner and my family etc, I've also had podiatrist make me special shoes so when I do need to do them few painful steps to the toilet it's not as painful as it used to be because I have proper foot support and knee supports too, I've even had a bladder and bowel clinic check to help out with problems getting to the toilet in time etc, I've had support from the pharmacist and pain team who've got my morphine and other pain killers up to a level where I can bear my pain ( not everyday but some) they did have my pain meds higher but I didn't know who I was or were I was so we've had to drop it a bit,

    the list off support I've had is endless.

    But most off all the support I get from my partner, family and friends keeps me fighting through, please don't give up I'm sure you've got much more than your RA to live for.

    Can you not contact your rheumatology team for support and help? Or if not contact your local social services and see what help they can give you.

    Or even ring the NRAS helpline there will be other people in your situation even though you feel so alone.

    I've been we're you are and you feel like there is noway out and that your useless etc, I was taught in counselling its all about grieving for who I used to be a 30 year old full off life, out partying dancing shopping and enjoying life to the full, I've grieved for the loss off that girl now and accepted that now I'm 35 (36 next month) almost blind in one eye, wheelchair bound, in constant pain, but has an amazing support network off family and friends and when I get a little bit off a goodish day then I make the absolute most off it, ok it's not dancing anymore but I can still enjoy music, I can't drink much cause off the meds but I still have the odd one or two, I love going along the beach and ok I can't get on it but I watch my little dog and niece play and it makes me smile like I'm playing with them, we go to places like the cinema that don't take too much effort and take our little dog on loads off walks for fresh air, and shopping I can still do that even if it is from my rise n recliner at home :)

    Tocolizimab is a very strong treatment and I've seen fantastic results from it, so good luck with it and please try and get some support from your rheumy team you shouldn't be suffering with only your partner to help.

    Take care

  • Thank you for your response, it must have taken some effort to write and I of course can appreciate your situation so thank you again. The RA team here in Brighton is a joke. There isn't a drop in, a phone line and no support whatever. I have supportive friends, my partner and my Mum, she doesn't fully comprehend my situation. The . one thing I do have is hope, the other is faith. Come hell or high water I will get my walk on the beach. I hope that your new meds work for you and I wish you good health.

  • Thanks x

    There is always the NRAS phone line 0800 298 7650

    They are there for everyone regardless off your area and are amazing.

    Take care

  • I have just read your bio. Don't be too wary about medical retirement, I did it a few years ago and it has given me my life back. I am free to do whatever I want to. Look into all of the benefits that you are entitled to. You are inspiring and I am really pleased that our paths have crossed. Take care,

    Paul

  • Hello Dandylad,

    I have just read your blog and it left me wanting to weep for you and the pain you are going through at the moment. On the other hand, I also want to thank you because it has reminded me that my life is so much better for me now than it has been in the past.

    I remember being in such pain that I couldn't walk to the bathroom and my daughter had to bring all the dining chairs upstairs for me to 'bottom shuffle' along the corridor. I remember not being able to hold my toothbrush or pull the sheet up on my bed because my hands hurt too much, I remember taking 15 minutes to pull a t-shirt over my head only to discover that it was on back to front and having to ask my 11 year old son to help me. I remember trying to get them to school with my child sitting in the front seat of the car changing gear on my command as my shoulders couldn't operate them (better not mention that to the police).

    These things are now no longer part of my life. They are a memory and a painful memory but that time passed, my children have grown up, I became well enough to nurse my mother in her last years, I got a degree in psychology and completed a post-grad teaching course.

    Like you, however, I lost a sibling to cancer at a relatively young age and like you, became the emotional support to my mother's grief.

    We have talked many times on this forum about the process of grief that having RA can induce. We grieve the loss of the future we had envisioned for ourselves and the life style that has been brutally altered. On top of that you are undoubtedly grieving the loss of your brother as well as absorbing your mother's grief.

    You seem to feel that you need to protect your mother and partner from what you perceive yourself to be at the moment. Your love for them wants to save them from witnessing the pain you are feeling and that is perfectly understandable but don't forget, they too need the opportunity to show their love for you - in your partner's case, he does that by caring for you. It's ok to accept that.

    When RA is at it's most active, life becomes about dealing with the physical with the result that, in some cases, we often neglect to treat the emotional damage that is occurring. I strongly believe that we need to acknowledge that at these times life is shite!!!! Sometimes we need to dwell on it and look at it before we can move on.

    We can tell you that this will get better, we can tell you that the new drugs are amazing. It will get better but right here and now I want to tell you that those of us on this site understand what you are going through and are offering our sympathy and encouragement.

    On a more practical note, have you been prescribed steroids to help you over this flare? If not, ask for them.

    Take care

    Judy xxxxx

  • Hello Judy and Thank Your for sharing and your kind words. Although to me at the moment it feels as though I am walking through some form of hell I do have a couple of things that keep me going, I have hope and I have faith. I also have to believe that my situation will change and I will reap positive benefits. For 10 years I was a Bereavement Counsellor however when death touches you personally all training goes from your mind. I was not close to my brother in fact we had not spoken to each other for over 30 years and so I don't feel loss over his passing but I hear and feel my Mothers pain and it must be incredibly hard to face losing both of your children so I have to stay alive, I want to stay alive to care for my Mother and see her to her end and then and as and when I can have mine.

    Because of my HIV and related illnesses I take on average 53 pills a day which also includes a few that should help my RA and I await to start toczilimub (or however that is spelt). I am aware that it can take months for that to kick in, why do these drugs take forever to reap any benefits and my suffering, for want of a better word will see me into another year.

    Today my partner came home with an office chair, it will suffice until I get a new one for internal use and just having that has given me freedom. Well enough freedom to roam at home while he is here and of course I have hope and I do believe that I will get my walk on the beach with sand in my toes and holding my partners hand and that hope will get me through.

    Thank you again for your kind words and I hope you have continued good health.

    Paul

  • hiya Paul, sorry i missed this blog yesterday. you are having everything thrown at you at the moment and from you previous funny, joking blogs i would never have guessed how hard things have got for you.

    you sound like a fighter, so your RA team are rubbish, next port of call maybe a good social worker, there are some out there. you have a multitude of problems and need their help, so i would personally phone them and see about benefits, carers help eg in the morning , would save your angel all the very hard work? Also why dont you talk to Terrence Higgins Trust as they might be able to help you fund an electric wheelchair and may have experts on RA and HIV around, or be able to give u info about the up and downs of the illnesses.

    As a counsellor, what would you say to someone in your situation. acceptance, healing, use your anger, ? Enjoy life?

    I think once you get the RA drugs and this part of your illness controlled, as you appear to have your HIV under control, things should improve for you, but it having the patience really, to cope not only one life changing illness but two, meds as you know are much better on both diseases these days and can u imagine telling folks twenty years ago about Aids. geez i remember it well, all the rubbish and scare tactics and things have moved on so much since then. I guess RA will too and we shouldn't be scared as the research and drugs available will help us and then we will all be dancing and walking on the beach, lol

    You have made me think of so many things today and thanks for your honesty and descriptions of your day. I was like tht two years ago, and with all the drugs are starting to improve, and see the light at the end of the tunnel, RA Fibro talks a lot of sense and has a lot of the problems with mobility you have, it is worth trying to get your gp to sort out aids...lol..appliances for help for you, i have loads and find them really good. Another thought ask your gp if you are allowed steroids , they work like miracles for me.

    hope you have a better day today, hugs Axx

  • Good morning Allanah,

    Thank you for your comments. I could have written many more pages about my situation but for one my arms couldn't cope with all that typing and the details might alarm or frighten or confuse people because the main focus here is RA. My benefits are just fine thank you so I do not have problems there. Per THT, I would not use their services if they were the only HIV support group on the planet. To let you and only you know I had a brother (well my most sincerest gay friend) and they in their infinite wisdom sent him a buddy. She lasted an hour and left him draped over his toilet covered in sick and s**t. The buddy had been informed that he was in the last stages of his related illnesses and that he was a very sick man however the person could not cope and left him and he was there for nearly 3 hours. I cannot put in to words how angry I was with them. One other confidential thing is that I knew Terry Higgins he was a drug dealer and liked his sexual partners as young as they came, that said he was a generous and loving man but everyone knew Terry and I am sure he is up on his cloud in heaven having a laugh at his name being used as it is. I do hope that you can keep this information to yourself, it would be appreciated. I tend to not look back because there is too much sadness, in my lifetime I have been to over 200 funerals of gay men and women who all lost their fight against related illnesses. I lost 5 very close friends in a month. I know of a dozen or more suicides and so Allanah you can understand why I don't look back too often. These drugs I am on have not worked, I cannot have steroids for many reasons, I am on gabapentin, nortryptilene, methotrexate and am waiting for toczilimuab or whatever it's called. I also take MST (time released morphine) and oromorph. The pain is incredibly destructive and without my Angel in my life I know that I would not be able to cope and would be in either a hospital bed or hospice. I have kissed the lips of death on about 6 occasions and I have no idea why I am here 25 years later... I have no old friends, they are all dead and I find making new ones painful so I don't bother. I have a small circle of friends and that's ok for me. I have been and am going again to the DLC although I cannot come to grips with the sock pulling on gadget!! I am having an electric recliner made for me and am being fitted with a smaller wheelchair that I can use indoors.

    There is always light at the end of the tunnel and I have to remain on this earth to help my Mum come to terms with loss of my one and only blood brother who died a few weeks before Christmas, I hardly spoke to the man as he was a bigot and homophobe. That said my Mum's heart is in pieces and that upsets me terribly.

    I am not going to give up and I will achieve my goal of an early morning walk on Brighton beach with my partner by my side. I don't want a mansion, loads of money just the ability to link arms with him, feel the sand between my toes and let our love flow as it has done for the last 15 years so that is what I am hoping for and that is what I will achieve.

    Ooops sorry I have waffled on a bit but I hope it now gives you an in sight into my life and I would like to thank you for the support you have offered me since I started using the NRAS forums and website.

    Enjoy the rest of your day, my arms, fingers, wrists etc need a long rest after all of this typing but I have enjoyed writing to you.

    Paul

  • geez Paul, ye dont type back, and your experience of TH Trust has surprised me very much. The one in our area has been helpful and hope that guy got his come upance and is leading a merry dance where he deserves. Thank the lord NRAS arent like that. !!

    I have no idea, as i dont have hiv ,wot its like but have been there for many friends and family who are still coping thankfully. My cousin though has hiv and MS and has been off work for 6 month, her lovely? girl left!!! And i suppose when if in some of their cases aids catches up with them I hope i will be a good friend and not running out on them when they are throwing up. Shame you cant have steroids as they dont half help me.

    I think although your brother was not a good person due to his wrong beliefs the newer generation are much more informed and seem not to give a damn about who sleeps with who but i still worry about them not using contraceptives and drug use that we now know can be problematic cos it would be great to see it disappear from this earth. But yeah maybe youre right ,looking forwards is the way to go , but surely all the love you had from the friends who have passed is not a bad thing?

    And if i win this lottery i will buy your electric wheelchair and employ you a big guy to carry you out of that house and onto the beach!!

    anyway dont answer back , rest up and think of that lovely recliner on its way. !!

    Have a better day my friend.

  • Me again, thank you for your comments. Thankfully we are all different from each other and there are good and bad and we all roll along together. I too hope for a planet that is free from HIV/AIDS and then there are other illnesses as well, my brother was diagnosed with cancer of the colon, stomach and kidneys, he died 8 weeks after his diagnosis. I totally agree with you about safe sex and it should be discussed with school children, the earlier the better because that could save even more lives. There is no excuse and it really angers me when people say they were caught up in the passion of the moment, well all they have to do is stop, cover up and carry on. Where is the problem? If you could see me I am the picture of good health and of course as you know HIV does not show. Thank you for the kind offer of an electric wheelchair but if you don't mind I would like to decline your offer as I have to have hope that I will make that walk on the beach and as for a big guy, I've already got one.

    Enjoy your Sunday

    Paul

  • The guy was only for the carrying of you if u needed and tincluded a big picnic hamper for you and angel to enjoy, but I will keep my winnings that I haven't won yet to myself! Maybe I will get a big guy to carry me to the beach with my winning , will add that to the blog xxx

  • I will see you on Brighton beach with big picnic hamper

    Thank you for the offer and on a re-thought basis would you mind get me a 2 seat electric buggy so we could at least then be side by side.

    BTW if I win I'll get you whatever your heart desires....

    Adieu

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