Good evening fellow sufferers, I feel terrible having to write to you knowing there are so many people trying to cope with day to day living making it as comfortable for yourself as possible with in the back of my mind that there is not really a solution in my case to ease the pain with a positive long term acceptable end result.
When my GP tells me that everything is working against me and I am only 65, then the positive outlook is disappearing quickly, and to make a long story short, this came about after I tried to increase my pain relief to 60mg Zomorph in the morning and 60mg in the evening with 4ml Oramorph 6 x daily if required.
This I believe is the absolute maximum I will be able to get from my surgery.
3 years ago I had a pacemaker fitted as I had a few blackouts and I had to stop working as master on oceangoing tankers through an electrical fault AF and my heart stopping for 5-7 seconds a few times a day..but not being very lucky my right hip /knee caved in 6 months later with severe degenerative osteo artiritis.
The heart has been sorted more or less but am very short of breath and the O.A. is that bad that from the moment I get up ( and believe me I dont want to), everything is planned in a standing position getting mobile , from the bedroom to the bathroom, bathroom to downstairs, backroom to kitchen, backroom to car etc etc as 5-10 mtr distances with a walking aid is a task worse than a days work before, and in pain...So here I am and I am sure many of you suffering the same cant get out of my mind thinking that at 65, my life is more or less over ?
3 years ago a good well respected acvtive job to someone crawling into a pharmacy on crutches collecting my morphine prescription with concerned staff asking Are you allright?!" would you like a glass of water?...unbelievable, yes and forgot to mention my sertraline anti-depressants, Warfarin,Bisoprolol, and Isobertan.
Sorry I am going on and on, about my situation knowing in my heart that by reading your articles and replies in this forum, I take my hat off to you all for coping with the condition and situation you all must be in, and by still keeping positive, but I just had to get this of my chest as I am still in pain, Cant get a hip replacement (BMI problem),am on max morphine painrelief and the GP thinks that everything is working against me... So what is next???
No normal life, trying to avoid any social live, and feeling guilty I have to put my family through this..
Written by
hjewest
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I'm so sorry that you are going through this. Living with pain is not easy. Have you been to the pain clinic at all? If not I would ask your gp for a referral. Sometimes it can be very helpful to meet others in a similar situation. I'm seeing a pain psychologist at the moment to help me deal with all the emotions that go with a life in pain (especially struggling with guilt and feeling hopeless) I find it very helpful and lean lots of new coping techniques.
Have you got a wheelchair or mobility scooter at all? Nothing is worse than feeling stuck.
My heart ❣ truly goes out to you and I can see how much you are suffering. I may not have the words like some other’s but I truly hope that you feel better soon. Please just take one day at a time and do what ever you can to feel as well as you can. We all try to cope from day today and some are better than others but please don’t ever give up and always think that there could be someone worse than yourself. Like children who have just started to begin there life’s and the years of pain and torment that they have to endure. One day at a time my friend that is all we all can do. I truly wish you well from the bottom of my heart ❣. Love and hugs 🤗🤗🌹🌹xxx
Thanks jan101 appreciated your reply, yes a day a time trying to find something to take my mind of it all...Its my wife,s birthday soon and my daughter asked me dad, please could you come up with something to make her day special!! I absolute dread these days, I have to start thinking about someone elses happy days for a change instead of my nightmares.
I hope that you will feel better soon and it will be lovely to give your lovely wife something special for her birthday. I know it can be tuff thinking what can I do for her but what ever you do I am sure that it will be very special and lovely. Take good care of yourself my friend. Love and hugs 🤗🤗🌹🌹xx
I'm so sorry that your feeling like this, we all get like this at times, I live along except for my dog, Bubbles, he is my anchor, without him I don't believe I could go on. All I want to do is go for a long walk, the way I used to only a few years ago, and I cant. I cant even get down the shop any more and that's only 10 minutes away if your 'normal' like you, I used crutches, they can be very uncomfortable but I bought myself a pair to replace the nhs ones that have those moulded hand grips and are much more comfortable to use. I would recommend a mobility scooter, I would love one, but mobility insist that they have a lockable place to be kept and I cant accommodate that, but it would give me such a lot of freedom, hey, bug could ride in the basket, after all, he is twelve. The way you are feeling will pass, but you have to fight. I was an Accountant in my former life, so I understand that you suddenly feel useless, your not but any means, its just finding a niche for yourself and that's the hard bit. do you live in a town? I live in a village and am lucky that people always want to know how your doing and pop in to chat, even if its only to pass on the latest gossip and collect some about you!! I am lucky too that I have go friends. Good luck to you, I'm sorry this answer isn't more helpful, just know that we all understand.
Thanks your reply, have 2 dogs and 2 cats who keep me sane, but tbh I rather be on my own, living in a small town my day consists out of bringing my daughter to work and picking her up, and bring the my wife shopping if anything is needed..
I thankfully have the best wife in the world who is looking after me very well, but it makes me feel so guilty.
I can hardly get out of the car so I am sitting in the car waiting until my wife finished her shopping ..cant help her with that, and also cant help around the house...I have to bring someone in to change a lightbulb in a ceiling or in a wall light..so its hard going not be able to stand up straight, and having O.A. in hip and knee the constant pain and clicking gives me little incentive looking for hobbies, social life, except for planning the best position with the least discomfort..
I hope you will find the right balance in your life, as I am still trying to achieve this..maybe winning the Lotterie or Euro millions will transform my life..
Hye hjewest, Stop feeling guilty about your wife, she wouldn't be there for you if she didn't love you, if you have a grown up daughter, then you've been married for sometime, and have had plenty of good times, well, its time to allow yourself somemore, I lost my partner when he was only in his forties, my parents died one at 65, the other at 68, you have time to have many more good things happen if you let yourself see them, time to give yourself a mental slap, what do you enjoy doing? [heavens, I hope your not one of those nice people that collect stamps, see how polite I was, just in case] do you not have a shopmobility centre in your town where you could borrow a scooter, we do in ours and its very popular, I use it if my friend and I go in town for a wander around, it would make you feel more involved with the shopping and your wife would have somewhere to dump the shopping bags - on you!!. Chin up, maybe when the sun shines you'll feel a little lighter of heart, I do hope so.
I sure can relate! I was in that spot a few weeks ago. I could only see pain in the future. When I experience long term flares, depression can creep in quickly. I look at it as a giant downhill snowball that can consume me. If I’m capable, I turn to music, comedy, or my large puppy for a mental reprieve. The music calms me and the other two can bring a smile or laughter. It really helps.
Also, I’ve finally started feeling good again. I hope you too can feel good again soon.
Yes have 2 dogs and 2 cats which helps to take my mind of things, but it seems that bit by bit all the fun and things you were looking forward too start to disappear when you are in constant pain.
I am lucky to have a wonderfull wife who is looking after me very well and without her I would be lost, she doesnt drive so I bring her shopping or for messages, but I can barely get into my car anymore, cannot sit in one position for long periods, and having to wait in the car as its impossible for me to accompany
and help her , as it gives me a lot of physical pain, it seems that even that privilege of car mobility might be short lived..
too....I am starting to believe that only winning the lottery or euro millions will change my fortune, and in my thoughts I am dividing the money already, including the good causes aswel ofcourse..
Thanks for your reply again and I sincerely hope you will find the right balance soon to live your life as painfree as possible, as I realize that if only the pain goes, every other bad aspect of life will fade away quickly for sure.
please don,t feel bad for writing thats why were here for to help each other and new ones. you are very welcome here we will help you,we help each other were here for you if you need to cry rant talk we,ll be here for you. susiejo1948
Accepting the change of life is probably one of the hardest problems to deal with, especially if you were always the self reliant sensible one, a trusted asset to the company etc. you never expected it happening to you if only 3 years ago someone would have mentioned walking aids, continuous pain, morphine, motability scooters etc. etc. you would have thought someone lost the plot..and my problem is trying to overcome the not asking for help, the feeling guilty, and trying to disguise the situation in thinking its not happening to me all this misery, so e.g. my whole mindset is already against sitting in a "mob scooter " to get around if you know what I mean, pain clinics, CBT,
as that is not me , so I rather hide and try not to participate in social family events as I dont want them to see me struggling like that..
Anyway thanks for your kind words and listening, maybe time will change the mindset...Take care, and I sincerely hope things are working out for yourself if you have hurdles or.mountains to climb in leading a normal life..
Hi hjewest I also know where you are at. I'm just 54yrs old celebrated my birthday on Wednesday. 18 months ago I was working in a job that I loved, a teaching assistant in a special needs school. Then I knocked sideways with depression, but recovered and was going back to work when I got a bad back, thinking that it was sciatica I rested for a few days but 3 weeks later I was no better so went to my GP who is brilliant and he sent me for some x rays again I waited for a couple of weeks before going only to find out that I had broken my pelvis and spine in 2 places. When I spoke to the school they felt that they could not keep me safe because of the children we worked with and on September 6th 2017, a date that will be forever etched in my mind I was medically retired due to my osteoarthritis and osteoporosis plus lipoedema and lymphoedema.. I tried to count my blessings in that I have a lovely family 3 dogs, but It didn't work and I hit rock bottom. I have had great support from Mind a mental health charity and you don't have to have a doctors referral. Contact them they are brilliant and can help you.
Sorry it's so long winded but do contact them they can help you.
Thanks Loramay, appreciate your reply, its not easy, and as I mentioned to someone else before that it so hard accepting the change, not only the physical side for yourself but also the mental side and how someone can be a company trusted asset, and in your situation a job you loved and you felt respected and worthwhile in, one minute and the next minute in my case a few years later, you are told there are no other alternatives but to let u go!!
I was trusted with a newbuild tanker project of 35 million dollars, the setup and initial worldwide trading.
5 years later now 3 years ago I saw myself in a boardmeeting that due to my medical history, Pacemaker, Hip Osteo arthiritis, etc they were very sad but adamanent that I was medically unfit for a seagoing career, (understandable) but there was also no alternative employment in the company anymore, which I expected and I knew of a few possibilities available.
The shock hit me very hard.
Changing my lifestyle now is the hardest thing to do, I hear people say there are mobility scooters and different help organisations available, but my problem is that I cant see myself using one and rather hide away and pretend it happened to someone else, even stop socializing, shopping, as I dont want people to see me like this if you know what I mean..
GP,s, nurses etc keep telling you keep moving otherwise you cease up completely but the only time the pain stops and you have little comfort when you stop moving and sit or ly down in a certain position..so what use or fun is it to go a restaurant with family, struggling to get there, in pain, struggling to get back etc etc.. I rather stay at home.. Anyway enough of my moaning, as I know yourself and many others in this forum are going through similar emotions and pain and listening and responding to someone elses misery is the last thing you are looking for, although it does help to talk to people here in this forum , and realize that I am not the only person going through this.
Thanks very much for sharing and replying to my cry for help and I do relate to your response and your situation.so Lets try and be positive eventhough it seems impossible.
maybe I have to start writing down the things I still can enjoy and still"can"do after everything that changed my previous happy life.
Take Care Loramay ! I hope we come up with the right answers to improve our quality of life...
Don't knock the mobility scooter. I have had one for 10 years. My son loved it so did his friends and even now when he is 18 years old. He still has to ride up the road and back and frequently find his friends on it as well. When I used it in school I was the best thing going with them all wanting a go and they were 14 plus. So go ahead and have a go on one and see your street cred go up
she lived in the netherlands, and she was actually a member of a "Scoot mobile club" which organized get togethers on shopping trips or sightseeing adventures, and you could see 20 or 30 different models on the road, they were like the towns Hells Angels..
I've been in pain for years from various conditions. 9 years ago I lost a lot of weight and although I still had some pain it was probably 85% improved. The last couple of years I gained about half of it back and the pain is getting increasingly worse. I finally made the decision to do something about it and know it will improve a lot as I continue to lose weight. Medical cannabis helps too.
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