I have had a lot of problems with my spine, needing several operations and other invasive procedures so have experienced long periods of pain and disability throughout most of my adult life. This has caused a condition called, interestingly, arachnoiditis ( I have a terrible spider phobia!) Along with pain has also come, inevitably I suppose, bouts of depression. But I never had to believe that it would go on long term, and between times with the help of a very supportive husband, have always been able to work and bring up my two sons. So I have experienced a lot of pain, and learned that the biggest problem was fear of the pain rather than the pain itself. (My husband died 17 years ago. I have been with my new partner for 8 years)
Now I also have PMR. The pain, when it flares you will all of course be familiar with. It is the long termness of it, fear for the future, that I am having a problem with.
- How to adjust to a lifestyle in which you are always tired? - How not to worry that every headache or jaw ache is not the dreaded GCA? - How to continue being a rock to my Asper’s son and bi-polar grand-daughter? - How to cope with a partner who asks me at least once an hour if I am alright!? -How to be honest with friends when it makes them feel so desperately sorry for me that they are uncomfortable about telling me about the good things in their lives? – How not to sound ‘yes but’ to the people with only PMR who advise taking up walking etc. when disabilities other than PMR are preventing it? - How to actually tell anyone how you feel because you don’t want to seem weak or self pitying?
In short, how to find acceptance of the situation without being accused (by myself, mainly) of giving in?
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Omanain
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Acceptance was most difficult for me, it took several months. I don't have half your problems and would hesitate to advise where to start but I'm sure some one will have something to help.
I do understand when you say about being depressed by some of the advice. This forum is one of my main supports but it can also be a cause of depression and frustration. I too have trouble walking any distance. I understand that we are each on our own journey, but I would love to be able to do what some of the others do.
There are other complaints made here that people put down to PMR or pred that I have lived with all my life.
I keep telling myself we are all different but it's not easy.
Hi Scats, I have been reading all your posts and feel for you. Losing your Mum in such a horrible way will probably be with you for a while yet. I lost my Dad under similar circumstances, and that was 18 years ago, but it still runs through my mind occasionally.
Are you still able to get out and do a bit of shopping? You are doing your best to be as mobile as you can so you deserve congratulations.
My walking is gradually improving, I'm still trying to reach the sea only one more field and a sea defence and I'm there! Winter will no doubt make the going harder. I have still not made a supermarket by myself but home delivery is so easy I don't mind that.
I think I have lost a lot of confidence but matters are not helped by the fact my husband gets uneasy away from home and can become panicky. As a result we don't go out much.
On the other hand we are both home loving people. We have a lovely house and garden and plenty of hobbies to keep us occupied so most of the time we do not feel that deprived.
It's very kind of you to be concerned about me, I was hoping to reassure you. We all have our low times we both happen to be going through one now. Take care and be kind to yourself.
Acceptance isn't giving in - it is being realistic about what you can do NOW and with the hope that next week or next month you will be able to do more but not beating yourself up about it.
You are only 3 months on the road and this is still very early days - in a positive way too. It truly rarely stays the way it is at the beginning forever. I don't consider I feel permanently tired - and I can do a lot of things now I couldn't at the start. You do learn to adapt and know what you can't do without payback. You can do and accept payback sometimes, other times it will impinge on something else and won't be a good idea - so "I can't do "that" just now but I can do "this" today and maybe "that" in a day or two".
What others think is their business - so them telling you you "should" be doing something that for you is a physical impossiblity is their problem. For example, don't say "yes, but..." - say "I can't. It is a result of ..." and use a confusingly difficult word before asking if they have any experience in dealing with it
Can you be a rock for them in a slightly different way? Presence rather than activity maybe? Surely they must be able to understand limitations on your part as well as their own?
And your partner - how lovely! Mine has asked me if I'm OK about twice. In 14 years!!!! Though hourly is maybe a bit wearing - can you not broach it? And the friends who won't talk about their nice things - encourage them and show them how much pleasure it gives you to share it.
This too shall pass - and in a year you will look back and see how far you have come. Everyone does.
It is NOT lovely!!! He sits with his back to me, on his laptop, deeply engrossed in his family history, and every so often throws out an 'you alright?' making me jump out of my skin because of my pred jangled nerves. And that's it, no matter what I respond he doesn't hear me because he has immediately returned his attention to his family history!! Now I just don't answer and he doesn't notice that either!!
My son and grand-daughter (not her father, her uncle) are very caring in their own ways, but they are a constant worry to me. Because of my back problems I have never been to be much support to them physically but they both tell me all their problems and I worry about them!! This can't be helped and I wouldn't be human if I didn't, but I need to find ways of protecting myself.
I do have a light and sound gadget which I use most days and I find this a tremendous help in getting things in to perspective - but yesterday I didn't seem able to get a grip. Thank you for your help.
Ah - that's different! Sounds a bit like mine except nothing would induce either of us to seek anything about our family history! He spends from late August to Christmas-ish every year working as scientific editor for a Proceedings book - and is totally oblivious of anything else while on his 'puter. But he does it in the spare room/his study so I ignore him. It's his muttered permanent commentary that drives me nuts - mostly he isn't really expecting a response but it is impossible to distinguish which is which...
Sometimes it’s very difficult to accept the hand we’ve been dealt & then to get PMR as well, it can be overwhelming. Have you ever seen a Pain Management Specialist? The guy l saw was superb, he was an Anaesthetist & it was actually him that suspected the PMR but he gave me great advice about how to deal with pain. I imagine the waiting list in the NHS will be long but maybe worth considering a Private Appointment to get your pain under control. I suspect you are feeling low as persistent pain inevitably causes depression.
My back is not great at the moment & there’s always that niggle ‘What is it?’ As l had Breast Cancer three years ago but I’m putting it down to dancing with my beautiful 3month old granddaughter on Friday as PMRPro sometimes you accept ‘PayBack’ for doing that something extra or Special.
Share with us here how you’re really feeling, keep it brief with your friends, enjoy their company, l love seeing my friends & having a laugh at one thing or another!
Oh! Wow! I remember when my grand-daughter was 3 months. I was completely besotted and bored everyone to death!! She is 26 now, amazing!
Apart from brief updates the only person I talk to is my sister. I don't know what we'd do without each other!
I did see a pain specialist also an anaesthetist, around 14 years ago. He put me on a pacing programme which worked really well. I really must start doing it again.
I do feel better today thanks. The pain is a lot better so that helps!!
Definitely try & do what your pain management specialist recommended & glad you feel better today. We all have days like that, yesterday l just stayed in bed until l felt better then l got on with some tasks & felt I’d actually achieved more having a lie in until lunchtime!
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Not sure what to do!
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