Someone to talk too!

JulieDadd

I have recently thought about ringing the samaritans but changed my mind. This will be the hardest thing I have ever written as I am going to completely open up about everything!!!
Here goes:
From the age of 6 to being 19 I was abused by a family member (this only ended when they died). Nobody knew I just got through it alone and only a small handful of people know now.
For 20 years I then had a good life growing into a young women with a boyfriend of 11 years and then my husband whom I have been with since I was 29.
At the grand old age of 40 I was diagnosed with breast cancer. I had a mastectomy with reconstruction, chemo, herceptin and 10 years of medication to stop the cancer returning ( i am currently on year 9).
When i was discharged from my local cancer hospital 2 years ago i was told to go out now and live my life and enjoy it!!!
Unfortunately like most of you on here i now have osteoarthritis. It hasn't come on gradually over time it's just completely crippled me in a short space of time. It just feels like it is consuming my body and the pain is terrible, i just dont know what to do anymore.
It's in my knees, my feet, my right wrist (I'm right handed).
Corona virus hasn't helped, I work full time but have been furloughed since the end of March. When I'm at work, even though I'm in pain, because i never stop my body doesn't get a chance to seize up. Going for a walk is so painful (I've already had a partial knee replacement right knee and that is great). Currently waiting to get my left knee done.
I spend so much time in tears, nobody understands the pain unless you have arthritis.
I dont feel sorry for myself, not once throughout my life have i said 'why me'.
Why not me?
I am in pain 24 hours a day and rarely get much sleep at night.
I just dont know what to do anymore and just need someone to talk to who understands.
I currently take:
Naproxen
Nefopam
Amitriptyline
Adcal D3
Need an arthritis friend.

Lilymary

Hi Julie, what a hard road you’ve travelled, and what a warrior, and survivor, you have become, but no one wants to have to become a warrior, or go through things they have to survive. But there have been many positives by the sound of it, and you have a lot of good things to hold onto, and be proud of.

It must be miserable being in pain constantly. I have read somewhere that long term stress can affect your immune system, but I don’t know how true that is. My working life has taken its toll on my health, as well as genes and spending my leisure time yomping, and the chickens seem to be coming home to roost now. My OA came on very suddenly, and like you I’m amazed at how quickly I’ve gone from being pretty much ok to struggling to get up the stairs and walk to the office, but I think my discomfort is nowhere near as severe and widespread as yours. I’m waiting for a new hip and a steroid injection, but I think it’s going to be a long and painful wait when I have to put my “normal” life on hold.

Do you think you might be able to start on a gentle exercise regime? There are some pages on this site that show some appropriate exercises for our many conditions, just do what you feel you can manage, and maybe build it up as time goes on (although I often struggle with them, but you might find it helps a little).

Try to find something you can do that will take your mind off it too. Gardening really works for me, and it gets me moving, and it’s great therapy for your mental health too. If you don’t have a garden, perhaps a little window box, or visits to local parks and gardens. Woodland bathing (aka tree hugging) is also terrific therapy, and will give a little gentle exercise. Yiu don’t have to walk far, just get yourself out in fresh air.

Have you been back to your doc to review your pain management? Perhaps a referral to a pain clinic? You might find that helpful

But next time you feel the need, don’t hesitate to call the Samaritans, they would prefer that people called before they hit The Big Crunch Point, rather than after. Perhaps seek out some counselling locally, or even a meditation class might help stop your brain spinning, and it has proven physiological benefits. You’ve got a lot to process from your early life and the trauma of cancer, as well as what you’ve got going on now. You are worthy of support. Don't be afraid to ask for it.

Mike1

Hi Julie. I cannot begin to understand what you have been through in your life but you are an impressive survivor. I too have widespread OA and a few other issues which leave me in constant pain and, as a 62 year old bloke, I can burst into tears at the drop of a hat. I live alone so nobody gets to see it other than my cat who I chat to often, what an understanding little thing she is. If you feel in need to chat the Samaritans will be there for you, they are non-judgemental and will help, there is also the Versus Arthritis helpline as well. In addition there are all of us sufferers on here who can offer the benefit of their experiences. Apart from talking to one of the helplines I would also recommend seeing your GP, OA is a strange condition as in some people it remains in one area, in others it creeps up slowly and in others it hits one hard. Hang in there girl, I hope you find what you need.

JulieDadd

Thank you both for your comments.
I started to read them and have been sobbing for the last 10 minutes. That's not necessarily a bad thing though as it's better to get it out than bottle it up.
I managed to get a little bit of sleep last night, don't know whether that was due to off loading a little.
I don't offload to my family much because as kind and caring as they are they just don't get it.
(I am married with 2 sons who are 16 & 19)
My parents know all about arthritis as they both have it and I presume that is where I have inherited it from. (My dad has rheumatoid arthritis and has had it since he was 40). My mum has osteo and has had a knee and hip already and is waiting for another hip anytime soon.
I do like gardening and we have a big garden but some days it's too painful (it doesn't help that our garden is very sloped, amazing views,but not great with all the steps.
I am a Yorkshire lass and live in Sheffield so hills are something we are built on and they are part of life.
My local doctor wants to hear from me in a couple of weeks to see how I'm going on with pain so I might ask about the pain clinic as I know where it is as I went there whilst going through my cancer treatment.
I think going back to work will help me too as I am constantly on the go ( I am a supervisor in a magnet manufacturing company, where I've worked for 26 years). I'm very much a people person so being at home for the last 14 weeks hasn't been easy as my husband and eldest son have worked continuously.
I think I'm going to take the car and pop to the shops now (the dreaded queueing) as my mum gave me a list of things they want, so I'll go and drop them off (my dad is shielding, copd, so I stand outside).
Thank you again, Lilymary & Mike1 for taking the time to respond. You dont know how much it helped.
I hope you 2 have a relatively pain free day.
Thank you
Julie

Lilymary

Good to hear from you Julie. It sounds like you have a plan to get past this latest rough patch, and I can perhaps understand how being taken out of your usual busy-ness and human contact may have made things harder for you. I often think being stressed can make pain worse, as your body is so tensed up which is contracting all the muscles around the inflamed joints, and it takes on a spiral effect. If I have a sudden random massive twinge, I try to consciously relax and let it drift away. Pain is intended to tell us to stop doing something, but if you are already just sitting or lying down, acknowledge to yourself that you are not in danger, the pain is therefore not important, and try to ignore it. (But don’t suddenly run round the house to prove a point !😁) Relax, tell it you don’t need to worry about it, and It sometimes seems to help. Not always, just sometimes.

If your garden feels a bit overwhelming at the moment, just find a corner and sit in it. If the plants are too big, in the wrong place, dying back or full of “weeds”, just sit and marvel at what it is doing without humans fiddling with it. Study the “weeds” (aka wildflowers”), see what insects and birds are enjoying them, talk to the plants (yes, it does help!), ask them how they are, admire the few flowers they are giving you even if they are struggling too, struggling is part of existence, from the mountains formed by the violence of volcanicity or the death of millions of sea creatures compacted under oceans and the upthrust of tectonic movement, Nature’s food chain, from insects up to lions, shrimps to whales, plants battling for supremacy in gardens and woodland. And let’s not even get started on the Big Bang!

So If you can manage 10 mins work to help one plant, just do that. Sorry to sound so zen and hippy (I’m really not like that, I work in the construction industry), but doing what little I can in the garden, or just sitting there, has helped me through many rough patches. I worked very briefly in Sheffield many years ago and remember the hills (!), but I also remember the beautiful gardens, so you must be on good soil.

This Covid stuff will come to an end eventually and some degree of normality will return, and your support mechanism, and the NHS, will be back in place. If the pain really is unbearable meanwhile, I think I’d say don’t wait the full two weeks (unless you are trialling a new drug that takes. While to kick in) and get back to your doc sooner than that. Meanwhile try hot baths, heat pads, ice packs, aromatherapy, snuggly blankets, chocolate, bad movies, read a daft book, take up poetry, sing in the bath, have a gurning competition with your family, whatever will make you giggle, and just give yourself a big daily hug, and gradually you’ll weave your way through this.

Sending a hug. X