After all the special efforts from Fran and Mark who helped me get back to work I feel my selfishness over the last 4 weeks has nearly drained all my strength and my willpower and I was hurting the two people I love most in the whole world, And all this is due to my RA constantly attacking me mostly my wrists and hands, also getting up at 4 in the morning just to get myself mobile before Fran gets up to dress me but most of the times she was up at the same time and then she was on the go all day with her job then looking after me when I got home.
Then Mark would come straight from nightshift to drive me to work and the times he would say lets go home Dad because he could see the pain I was In even he had tears in his eyes and this is when I felt I was being selfish and stubborn and only once did Fran say don’t go and this was because I was sitting crying she knew how much it meant to me to go to work, And the great thing all through this I have not had one problem with my lungs. The way things are going with my Lungs I can see the transplant being put on hold again and praying Tony Dall05 gets taken of the transplant list.
I told Fran and Mark from the day I decided to got back to work and it was not just to prove a point about getting there I want to stay at work as long as possible, we all know I am going to be housebound in the near future so I will plan my next ventures and not to sit and wait for the big man in the sky to shout Ok Mattcass you have fought a long hard fight and now it’s time for a nice long rest, Oh God where’s he away to Now’ between him and Tony Dall05 they don’t make things easy for me, Oh well I can wait and I will l get them sometime. MATTCASS
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mattcass
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22 Replies
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Ach I'm sorry that you're in such a horrid situation Matt. I totally understand the wanting to keep on going to work until the grim end. It's about pride and self-respect and how you think about yourself as a man, as a provider, and it's devastating to have that change and a big thing to come to terms with.
Can you sit down with Fran and Mark and tell them how you feel?
They love you and are with you every step of the way - but they won't want you being so hard on yourself.
Being stubborn and proud can motivate & propel you a long way in life - but there comes a time when we have to accept that we need to tread a different path because we're hurting ourselves and those we love. That sounds like where you are just now.
Be kind to yourself and try to find a middle path - it is there:-}
Matt as has been said before unless you tell your loved ones how you feel and whats going on in your head they can't help you and all you are doing is pushing them away,which is no good now is it. Its okay to want to carry on as long as you can,but don't martyr yourself to the work place as it will kill you if you carry on. You have a lovely family and i think they want you to enjoy some retirement even if it is not what you wanted to do. Being stubborn is one thing being stupid for the sake of it is another. When i got made redundant i wasn't going to go on the sick as i was adamant i could carry on.It was my advisor who told me different. I haven't worked since and yes i miss it like hell,but Matt i couldn't do a days work now if i tried,i have been shopping on my scooter and it is as much as i wanted to do and i am tired out now,so you might want to give yourself some serious talking to about how you are going to go on,not killing yourself to go to work when you have loved ones who would sooner you stop and enjoy time with them instead. Also they would worry less as well. Love sylvia.xxxx
Matt, seems to me a big, gentle hug is needed here! You are trying so hard, but the pain goes on unremittingly and we fellow RA sufferers know exactly how you feel, it's a huge task trying to balance work, family and this rotten disease! I carried on working till I was 52 years and it nearly destroyed me and my marriage. I would be out at 8 am, sometimes not returning till 7pm, and very often I would go straight to my bed and lie down for a couple of hours due to the pain and exhaustion. How could I be a wife, mother, run my house and have any kind of social life, it was impossible.
In the end I came out of work one night, virtually crawled to my car, sat there and cried for about an hour, knowing I could not go on anymore. I decided then and there I would have to give in to the beast of pain and exhaustion because I needed to save anything I could to be a wife and mom, that being the most important thing to me. I got signed off work and eventually went long term sick. My employer knew I had got to the point of no return and I am sure they were quite relieved when I left, because they soon found a young, fit person to take my place, and quite rightly so I think, I could not perform at my best because I was only running on 25 per cent levels.
I know things are very different now because of the rotten ATOS etc. so I don't know if you can even afford to, but if you could think about finishing work, give it some serious thought. What with your lungs as well I think your body is at breaking point, if you can retire now you can re-charge a bit and try and get on with your life. You are not giving in, you are compromising, coming to an agreement with things. Hopefully then you will be able to cope much better, and your family must be heartbroken seeing you like this, they want their husband/dad back. I always say RA affects the whole family 'cos life is never the same for us or our families. Sending you a gentle hug, Lynda x
Hi Matt, I agree with what's already been said. Please don't be hard on yourself and I also wanted to say you're not being selfish, you are being caring because you are clearly showing great consideration for Fran and Mark. Part-time or voluntary work could be other options which I am doing myself at the moment (ie voluntary work) because I had to face up to not being well enough to work. All the best, Fran
Hi Matt , read your blog and really feel sad things are like this for you ....have read your blogs in the past and think you are a very positive brave man you are not selfish it's just finding the right balance and it's so obvious how close you and your family are which is lovely. Think a rest is a good idea though, please don't force yourself to do anything , as everybody always says listen to what your body is telling you ... I really agree with Sylvie and also think Fran's idea about voluntary work is a good option ...don't be hard on yourself emotions runs high when the chips are down ....thinking of you Claire x
Hi Matt, my heart goes out to you....I won't say anything as our friends above have said what I also feel....just to send you a massive hug and know that we are all thinking of you and your wonderful family. xxxxx
It's true that that u hurt those u love the most. I'm 42 and have been really bad for the last 4 years, my daughter is now seeing a counsellor due to the stress and I feel awful... But in June I realised work was not worth pursuing anymore for how wretched it made me feel and the effects on myself , and the 2 people I love the most in the world. Hubby, and daughter. I now have a better quality of life mentally even if not physically. We are all happier. Your wife and Mark love u for u, and will be sharing In Your pain, seeing u go through such tough times. Be kind to yourself Matt , let your decisions be based on what's best for u and that decision will be the best for your family. Take care. X
I never expected that I would retire at 48. I was planning to reconsider working life at 57 when my mortgage was paid off, and have a think about what I wanted to do for the remainder of my working life. RA has changed all that. It kissed goodbye to my teaching career, but there is a whole other world out here, a world I didn't even know existed. There are opportunities to be seized with both hands while I still can. You are a good hardworking man, and you owe it to yourself to give yourself some breathing space, and some time to be as well as you can.
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you are not selfish it's just finding the right balance and it's so obvious how close you and your family are which is lovely. Think a rest is a good idea though, please don't force yourself to do anything , as everybody always says listen to what your body is telling you ... I really agree with Sylvie and also think Fran's idea about voluntary work is a good option ...don't be hard on yourself emotions runs high when the chips are down ....thinking of you Claire x
