Moving on, how?

Hi all,

I have been contemplating for some time now, if I ask this question or not, so here goes! I am 33 years old and first had symptoms of Wegener’s Granulomatosis when I was 27 – It started with my eyes and progressed to a generalized condition. I worked full time as a self-employed Electrician, but had to stop working because of the many problems I was having due to this bloody illness. Unfortunately I still find life a struggle at times because of the WG, the main issue is the chronic fatigue coupled with depression and allot of other random symptoms that really do get me down at times. I can’t commit myself 100% to anything anymore. I don’t want to let people down, so I try not to put myself in this position. I really want to move forward in life but don’t know how too - can anyone help or give some advice as I am feeling a bit desperate?

I am under the care of my local mental health trust, but I am confused to where it’s going!

Paul

19 Replies

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  • You poor thing! This sounds like a very tough time for you, and I know how hard it can be, but don't give up hope. Difficult to know what to advise but wanted you to know that someone is out here listening!

    If it were me, I think I would check with my WG consultant which of your symptoms were being caused by the illness and which by the drugs. If the illness, then perhaps you are not getting the best care and need to move to another hospital who know more about treating WG. Where are you in the UK, Regie? If the drugs, then it maybe time to review them and see if another drug regime would suit you better. Not knowing the details makes it difficult to talk in anything other than generalisations, but you get my drift?

    Other than this, you need support from loving or, at least, empathetic people. We all need this, so search them out if they are not in your life right now. Have you got a local VSG? That would put you in touch with others who fully understand what you are going through.

    Good luck, Reggie.

  • I am convinced that my symptoms are due to the WG and not side effects of the medication - I might be wrong! I attended a Lupus/Vasculitis clinic at Kings College London. I can’t complain much about my care, as I have always been treated well there. The problem is that my blood tests are pretty normal so there is not really any reason why my treatment regime will change much. My Rheumatologist knows very well my mental health, and how I feel at the moment. Unfortunately there’s not allot he can do!

    I did attend a support group a couple of years ago in Surrey. It was interesting to meet different people how have Vasculitis. Unfortunately it didn’t really do allot for me, as I felt a bit out of place. I guess the reason is that I try not to think about having a chronic illness, and try hard to keep my mind on other things – easier said than done sometimes. The only time I really talk about it is on this forum and with my consultants. It’s ok taking to family and friends, but what can they do, if anything they will only worry - so I don’t go there.

    Paul

  • Check out the link between prednisolone and depression/mental health problems with your specialist, Paul, just to make sure there is no cause and effect with you. It is a listed side effect.

    After that, difficult to know what to say to help. I would suggest taking on board the truth of the situation, ie accepting that you have this illness, but knowing that it can be controlled and life can still be good. I hope the London consultant has your WG under control, ie that you have had the hit it hard initial treatment, usually cyclophosphamide and pred.? What are you on now? It just might be that your treatment has not been adequate.

    As for not saying yes to things you can't be sure of being able to do, that is sad. Doesn't make you feel good, I am sure. I think it is possible to say yes but, to protect yourself, tell whoever it is that is asking you along, that you have some days when you are so tired that you won't be able to make it, I call them my vasculitis days (luckily they don't happen often any more!). This will involve you telling people you have vasculitis. It is important that they know. People love to be sympathetic and will make allowances. It makes them feel good. Don't deny them, or yourself, that!

    I think you will feel much better when your symptoms are better controlled. If you feel able, perhaps you could share your treatment so far? That way what we write could be a lot more relevant.

  • I could understand mood swings, say if I was on high doses of Pred, as I have been in the past, but I am only on 10mg and have been for the last 4 years. I also take 150mg of Azathioprine and six other items on my prescription.

    As if my treatment is not adequate or not, I can’t see my specialist changing it unless my bloods change dramatically. When I was admitted to hospital back in 2008 because of a flare, I was treated with Cyclophosphamide and Methylprednisolone. My inflammatory makers settled and my c-anca went negative. After 3 months on Cyclophosphamide I was swapped to Azathioprine by my renal consultant. A short time after commencing Azathioprine I had blood tests, as you do and my c-anca was positive.

    Paul

  • Thanks, Paul, for this info. It seems you have had all the correct treatment at the recommended times, so unless there is a long term use causing depression going on, it seems that the difficulty is not with the treatment side of things.

    You say, in one reply on here, that it is the change of lifestyle that is the problem. Bringing you down because life is not the same? I think that is one of our biggest difficulties, accepting that we're one of the chosen few who are having to deal with this change. I know my GP talked about a grieving process for my former life when she told me I had the disease. I just didn't believe her and to some extent still don't! I still believe if I could get off the pills, then my body would become well, as it was in the past.

    Hard to know what to write to cheer you, especially as mental health professionals are now shining a spotlight on your mental health problems, ie. giving them a prominence in your life. I would just say that this is likely to be a dark phase. It will not last. Others with vasculitis say they have a good life despite all the problems. Good but different.

    I hesitate to advise as I don't know you well enough but am I right in thinking that some hope for the future is needed? It might be worth your trying, if you can cope with the idea, to make plans that involve tiny steps to a more normal existence. Think of what you would like to achieve in one area at first, then set tiny step goals backwards from this to where you are now. Make the pace as slow as you like but build into every day something that you see as a step forward in the moving on process. Write charts to say what you will do each day and tick them off once done. Is there a loved one around who could help with this if you don't know how to break down the steps in moving forward? Keep the chart on your fridge, or whatever, so you can see it every day.

    Above all, involve people. This will force you into some 'normal' exchanges.

    I have heard that watching something on TV or DVD that you find funny each day, ie a daily laughter input, can work wonders. What makes you laugh, Paul?

    As a final comment - try the support group if you possibly can, even phone contacts can be so supportive and these are available. The support group leader will be able to chat to you herself or to put you in touch with someone else in the same boat as you. Maybe this should be built into your chart!

    Forgive me if this is not useful. Thinking of you,

    Ayla

  • Hi Paul,

    I fully understand, your problems because I feel in the same situation as yourself.

    I wish I had the answer but I dont, I do wish to move on, but dont know if I can. I have just asked to be a volunteer to help out with my local hospice in the admin office, one morning a week. I have done this to try and move on, rather than get depressed at home, taking tablets etc. I am older than you at 57. I dont know yet whether I will be able to manage it or not.

  • I agree that keeping one busy is important, and keeping out the flat more so. The thing for me is that everything I do in my life at the moment feels like a stop gap, there is no purpose to it all, It frustrates s the hell out of me. Like I said before commitment is a big problem, at 33 I feel very sad by this!

  • It is very diffcult for you and so young too.. we have a friend in the next village to us who's son, Greg was diagnosed two years ago this Christmas with WG he was 22 years old..as for many he was very ill from September 2010 and was finally diagnosed Christmas Eve 2010. He was rushed into A&E very ill and his parents thought they were going to lose him... but luckily for Greg John's consultant was on duty and diagnosed WG and saved his life.... plus the help of Cyclophos and prednisolone Infusions...Gregs mum got in touch with John as she had heard John had WG too...Greg has built himself up very slowly with the help of his family especially his mum... he went back to work after 12 months.. 4 days a week... this summer just started cycling again but very slowly cycling a few miles each week. Take everything slowly.if possible let your family help too... Vuk have some leaflets "Understanding Vasculitis" which you could give to your family and friends... this can help them understand what is happening to you...... I agree with Ayla, you need to talk all this over with your WG consultant, find out if you are receiving the correct treatment..... if he/she is a a good consultant they will listen and help you too...if not you can always speak to John either by email or phone... there are over 22 support groups dotted about the UK many people find the vasculitis groups very helpful... vasculitis.org.uk/about/fin... or to contact John by email vasculitis.org.uk/contact

    Just take care

    Susan

  • Hi Susan, I have had the WG for six years now, my family have got used to me being this way. It’s my problem this chronic illness thing, there is nothing my family can do to help me! And I don’t want to make them worry, as I would find that a bit selfish on my part. Thank you anyway Susan for letting me know about this: Understanding Vasculitis leaflet.

    My friends and family do tell me to stop being hard on myself, and to not overdo it. That’s ok but I still consider myself a young man! And knowing what I could do before I had WG is harder still.

    Paul

  • It's a very long and difficult road we all travel.

    I would dearly love to go back to work as my brain is still intact (kind of!) and I would like to be of use again. I had the chance of an amazing glitzy job opportunity recently but reluctantly had to turn it down as I knew I just couldn't stay the course. I cried for an hour after telephoning to say "No". I then recommended someone else for it, who has proven to be brilliant in the role. The way I look at it is, my loss is someone else's gain.

    It's hard to deal with all this illness takes away from us but maybe when one door closes another one opens. Well, that's what I'm hoping anyway!

    Here's to "Moving on"! :-)

  • Hi Paul

    I can so emphasise with how you are feeling . I was diagnosed with WG April 2011 with kidney involvement and am sometimes floored with this damn disease. I am treated at my local hospital by Renal consultants from Kings and like you have no complaints about the treatment but am currently going through a period of depression, although I do feel that I have come through the worst and can at last see the light again.

    My depression was due to not only how the disease and kidney problems affects my body but a big factor for me, I believe, was prednisolone. Now that I have 'told' myself that it the cause of my depression I feel that I can handle it a lot better. I am one of those people who has to know what causes what and once I can understand why whatever causes whatever, I can kind of deal with it much better.

    Ayla is correct in that we have to learn to accept that we may never be the same again and that is hard if you had previously lived a 'normal' active life. During the counselling sessions I am having, through Kings, I discovered that I am grieving for my old self. The grieving process can be a long one sometimes so in respect of myself, and I am sure many others, that along with the Pred problems can cause all sorts of mental health issues. Nobody prepared me for that and I have gone through an horrendous time, including thoughts of harming myself, but I am beginning to come out the other side, thankfully.

    Have you been offered counselling Paul? I kept rejecting it believing I could sort my own problems out as I always have done in the past. When I got to the stage when I kept breaking down in tears everytime I saw my consultant I was told I was depressed and suggested I tallk to their counsellor. Like yourself, I didn't want to admit that I was that ill so I told him I am not depressed, just totally peed off with how I am feeling etc. Ask you consultant about counselling Paul, it may be of some help to you as the counsellors from Kings, and I am sure at any other hospital counsellors, understand how patients are affected by medical problems . I found that CBT has helped me also so that may be worthwhile in checking that out.

    I know it is hard to move on on this difficult and long journey Paul and I am now just about accepting that I may never get my old self back and am beginning to learn to how to live with, and accept, what I am able to do when I have the energy to do it.

    I am a support group leader of the SELondon/NWKent Vasculitis Support Group and you would be more that welcome to come along if you wish. I find is VERY useful to talk to other people who really understand how we are feeling because nobody else can. Please message me for details of the next meeting if you would be interested in coming along, we would be pleased to see you.

    I truly wish you good luck Paul, you will get through this sweetheart so just hang on in there :-)

    Best regards

    Jacqui x

  • Hi Jacqui, I am under the care of a Psychologist with my local trust that’s in Kent and not at Kings College in London. I had a consultation with a Rheumatologist registrar at Kings back in October. The registrar was very concerned about my mental health and contacted one of the psychiatrists at Kings, unfortunately the only plan of action was a 'crisis plan', that just meant me going to the nearest A&E department, if I had premeditated suicidal thoughts.

    I don’t think that acceptance of a chronic illness is the problem, for me it’s the change in life style that that I am having a hard time dealing with this!

    I too have Kidney involvement. I didn’t have Kidney involvement in the early days, but in 2008 I had a bad flare.

    Thank you very much for the support group invite, but at the moment I it’s not a good idea for me!

    Paul

  • Learning to live with this disease is very difficult - whatever your age. I was diagnosed at the end of January 2012, and I know I am still grieving for my lost life. I find it so hard hearing about all the trips my friends are going to do, the long weekends with grandchildren, and the wonderful walks they go on.... and that's only the start.

    Part of the way that I have tried to cope is by reading - luckily have always been a big reader, and buying a Kindle has made a big difference. Two books in particular have helped me to see this type of disease from someone else's perspective, and made me realise that so many people are in a much worse position than I am.

    One was 'Another Alice' by Alice Peterson, who was diagnosed with Rheumatoid Arthritis at the age of sixteen.She is very realistic, and writes well, especially about the really black periods that she went through, and how she came out to a productive, if different, lifestyle.

    The other was 'I'm sick and tired of being sick and tired' by Sheri Schwar. an American who was diagnosed with Takayasu's when she was in her twenties. Her style is very quirky and could be difficult, but her medcial problems are all completely recognisable.

  • Thank you, BronteM, for the information on books you have found useful.

    A book I have found really helpful is "Self - management of Long Term Health Conditions - A Handbook for People with Chronic Disease". Published by Bull Publishing Co, USA & distributed in the UK by the Stationery Office.

    Tel orders: 0870 600 5522. Fax orders: 0870 600 5533. ISBN: 0-923521-74-7

    I would be very interested to hear if anyone who has used this book has also found it a good source of support.

  • I was searching for this book which I found on Amazon, when I found another interesting site in the google web search! I ended up on the NHS website - they are running a programme called the EPP The Expert Patients Programme.

    Here is the web address: nhs.uk/NHSEngland/AboutNHSs...

    (If admin can shorten the URL please do so, thanks).

    I am seeing the GP on Monday, so will ask about this programme.

    Paul

  • Hi Paul

    I can't add much to what has already been said but I have been trying to think of the little things that may help you.

    I have in the past suffered depression and here are things I have learned.

    I think that depression can make fatigue a lot worse and the illness can cause you to lose a lot of confidence.

    You need to be kinder to yourself and maybe, just for a while, allow yourself to feel this way instead of fighting to give yourself time to relax and recover a bit. Have a weeks holiday from worrying, make a conscious decision to enjoy a week off as you would from work. What would you have done in a week off from work? Give yourself a treat.

    Get as much sunlight as possible (difficult in the winter) so really important when the sun shines to go out if possible and when you go out look up and start noticing little things. When we are depressed we naturally look down and become introverted.

    Do something that uses your creative side, maybe make something. I don't know what you are good at but you might find a skill you didn't know you had. There is nothing like knowing you have done something well to boost your confidence and you never know where it may lead.

    Do you like music? Lose your self in your favourite band.Take yourself back to when you felt good, you might find the feeling again for a short while. I find music better than the TV or computers for lifting the spirits.

    You have the illness but it doesn't need to define you. You are still the same person underneath as before just physically changed a little.

    When you feel less depressed maybe you might become just a bit less fatigued enabling you to do more socialising a bit at a time and who knows where this will lead.

    Don't stare at screens too late at night. I think disturbs your sleep. I used to watch TV when I couldn't sleep but now listen to the radio, that never fails to send me to sleep. Either it is because it is so boring or it harks back to being read to, when little.

    Just small changes at a time can make all the difference even if you don't feel like doing them just give it a go and see.

    Sorry if this sounds mad but these are the stupid little things that have helped me in the past. All easier said than done, I know. It all takes time but one day your mood will lift. Whatever the reason for it. You are still young and have time. So what if the things you do are stop gaps? You just don't know what will come of them. No one knows what is in the future so try to enjoy the moment if you can.

    I know support groups are not for you but don't be alone, keep in contact on the site.

    I wish you all the luck in the world.

    Lynne.

  • Thanks for the kind words Lynne, I agree with you that small things do make life much more bearable. One thing that I still enjoy very much is my motorcycle. Some of my friends have said in the past that I shouldn’t be riding the bike anymore - when hell freezes over will I stop riding my bike. I do believe it’s important to try and hold onto things that still give one enjoyment. I used to be keen at scuba diving, and living on the Kent coast did allot of wreck diving. I had many interest allot that I can’t do now! I am not too sad about this, as other interests have taken their place.

    Paul

  • Spoken like a true biker!!!! The boys in my family are all bike mad. I fact my old boss has had his knees replaced twice due to injuries and he still won't give up biking. His wife is not pleased at all!

    I think family and friends watch you so closely to,protect you but it is only out of love even if it does get a teensy bit annoying sometimes. As long as you feel safe and well enough.

    You are so lucky to live by the coast. I always feel better with a bit of sea air.

    You sound in a much better place at the moment.

    You are obviously a very talented person so I am sure something good will turn up in time.

    I just remembered another tip. When I was first diagnosed I was told to listen to my body. I didn't understand this at all. Now I know to pace myself. If I have a big day planned I make sure I have a good rest the day before and after. That way I don't have to miss out on things. Having said this it has taken 2 1/2 years to get to this stage so progress is slow. When I feel down I look back to last year and see how much more I can do this year. It might be slow but it is progress. Patience is a hard lesson to learn.

    I think we always will live in the shadow of 'will we get a flare' but as time goes by this is getting less and less and I refuse to worry about it, if it happens then I will deal with it then. I might think differently when I have to come off the Aza so watch this space in 2015! I will probably be in a right panic.

    Lynne

  • Just a quick update:

    I am enrolling on a self help programme called: The expert patients programme (EPP).

    I will be starting this in the new year, and am looking forward to starting the course.

    nhs.uk/NHSEngland/AboutNHSs...

    Paul

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