i am struggling to accept the "new me"

debbiedo49 · July 2018

Thanks @Banny good advice and yes my son is good with me

Topkitten · July 2018

@feir, that is exactly the same for me. My suicidal thoughts only ever break through when I am let down badly and I have acted on them about 50% of the time.

To others...

Avoidance is natural when you feel like you will be let down of see someone who is just wasting your time because they don't even get close to understanding.

I have though always had good support from the 111 although far too often they send an ambulance which is of no help and is wasting their valuable time Generally the ambulance service is quite good though I did recently get a comment basically playing down my pain simply because I put up with a lot of pain letting them in without showing it. I have found that because I suffer so much pain so often I don't let it show. What is the point os crying and screaming 50% of the day when I know that 50% was a good day?

One other thing that is suggested far too often is to contact Samaritans. The problem with Samaritans is that because they can't access records and cannot make notes I personally find it extremely depressing trying to describe 13 years of suffering and a multitude of covered up mistakes by the health service. I did, on one occasion speak to someone who basically didn't believe me. Healthy people generally cannot conceive of the health service not providing an excellent service in a quick response time and solve all the problems either when they arrive or when you reach A&E. I think most people have blinkers on when it comes to long term conditions.

TK

Waylay · July 2018

This is long, and I've rewritten it multiple times. Hope it makes sense!

I think we're all feeling the loss of who we were to smaller or larger degrees. In some cases it's the loss of physical capability, to wash the dishes, go canoeing, pick up a crying kid, hike up a mountain, or sit at a desk long enough to do a job. For others it's mental abilities: the ability to concentrate, analyse, think, and remember things; to write a memo, a letter, play the piano, or to read a book and still be able to remember the beginning by the time we reach the end.

Some of us have lost both physical and mental abilities. Some have lost more: jobs, careers, financial stability, homes. Some have lost friends, partners and family, maybe because they don't believe what we're going through, or because they can't deal with the idea that someone just like them can have something so devastating happen out of the blue. Some of us feel that we've lost everything we used to be.

How do we deal with such fundamental changes to who we are, which we didn't deserve, and never expected to experience? I really don't know, tbh. All I know is that I spent a few years doing nothing, going nowhere. I kept thinking that there was a cure for what had happened to me, that I could get back to who I was, or some approximation of her. I put my life on pause while I had injections, physio, osteopathy, denervations, drugs drugs drugs... And although it became increasingly obvious that I wasn't going to be able to go back to who I used to be, I stayed there, stuck, refusing to accept it and move on.

Then my surrogate mother/housemate/carer/friend got sick. I cared for her for 3 months, as she got sicker and sicker. She was always a vital, healthy person, rode her bike everywhere, took rambling holidays, vegetarian, never smoked, etc., and it was so hard to see her wasting away. She was diagnosed with terminal colon cancer (spread to liver, stomach, lungs) 8 days before she died. She was 61.

Losing her was incredibly difficult; I'd never lost someone that important to me before. I did everything I could to help: calling her friends and relatives, hosting her sisters, helping her to write a will, and eventually, donating and recycling her possessions. I finished transcribing the beautiful love letters her parents had written when her Dad served in India just before Partition, and found a museum that wanted them.

Her final gifts to me:

1) She left me 400GBP in her will, which was a crazy surprise.

2) She was quite uncomfortable with emotional intimacy, although we had grown very close, so she asked her sister to tell me something after she died. Just as I had thought of her as a surrogate mother (as well as a close friend), she had thought of me as the daughter she never had. I wish I'd been bold enough to tell her that I felt the same way when she was alive.

3) A few months after her death, deep in a serious depression, I was trying to think of a way to honour her life. She had died too young, which was incredibly unfair. She sang in a choir; played African drums; volunteered at a local literary festival; had visited 86 countries and had all kinds of crazy adventures; wrote really amazing travel diaries (published after her death); was a terrifying Scrabble player; had a degree in archaeology; loved great wines, but never got drunk; could fix a bicycle, cook amazing risotto, and sew her own clothes; and was a much-beloved aunt, sister, and friend (her funeral was PACKED, and people came from all over the world). She was incredibly vital, active, and loved, and yet she was gone. I hadn't really been living my life for years, just surviving, but for some reason I was still here. The best way to honour her was for me to live.

So I decided to make a new life. It isn't the life I expected or wanted, and there have been false starts, wrong turns, and long periods when the DWP squished the ability to try right out of me, but I've made progress. I still grieve, I still think of the way it used to be, and I still don't know how to get over it all. I still miss my friend. And I'm living in a good place, I have partners and friends who are wonderful, and I've done a bunch of therapy. Still a lot to do, but... Hopefully it'll work out eventually.

Banny · July 2018

@Waylay Thank you so much for taking the tie to respond to my post. I understand what you are saying about grieving the loss of our abilities, I know in my case i hadn't even thought about letting myself grieve for the person i was... I was too annoyed with myself and my disability.
I am so sorry to hear about the loss of your friend, cancer takes people away so quickly sometimes. You don't have the opportunity to get your head around the diagnosis before they are gone, I lost both parents to cancer one within 3 days of diagnosis the other 6 days after.
You are bound to miss someone who was so important to you, I know i miss my Gran who i lost 17 years ago but there are still days i want to talk to her. I will always carry her in my heart as i am sure you will carry your friend around in yours. Hopefully, it will work out for us all eventually.

i am struggling to accept the "new me"

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