First can I thank the ppl who have replied to earlier posts that Ive posted. Ive got a bit confused about what replies I have replied to.
Anyways, now I have been told I might have rheumathoid arthritis (a disease that spell check is telling me that I cant even spell!). So Ive got extreme tinnitus, hearing loss, eye sight problems, severe depression, MS etc etc bloody etc. And now a possible second auto-immune disease for my collection. And a member of my family told me I should remember that there are people worse off in the world and she gave the example of someone lying dead on a beach in Syria. Im not sure why it being in Syria would make it worse. Being dead is being dead. She might as well have said the guy in the local grave yard who was buried the year Victoria ascended the throne.
And Im trying to get back to trying to finish my phd but my hearing is going down and down and the 8 tinnitus noises are going up and up and I find it so hard to work when it sounds like helicoptors are doing circuits inside my head. I did do some work today. But I did as much today, sitting at the computer from dawn to dusk, as I would in the past have done in literally ten minutes. So maybe I can get my phd if they give me 100 years to finish it.
The truth is that every aspect of my life has collapsed and at this moment in time (and Im sure I will climb out of this) I wish I was teh dead guy lying on the beach in Syria. I never knew it was possible to feel so defeated and absolutely hopeless.
feeling overwhelmed and defeated is not unreasonable, but I would suggest that after a while try another way. I am not trying to suggest that this is easy (for me sometimes it is flippin’ impossible - at which point I just wait for the opportunity to present itself)
Everyones state is relative, there will always be people better or worse off. I have tinnitus, but it sounds as if mine is miniscule compared to yours. I tried to manage my tinnitus with mindfulness techniques and got absolutely nowhere. I read a bit about it and learned that there is no actual sound but the brain generates an internal noise, this suggested to me that noise cancelling headphones are of no value either. What did help me is to have actual real noise for my brain to process, either radio, my music or talking books.
Hope you doing OK today. Thanks for your reply Mick. It really does help. And Im sorry to hear about your tinnitus. My (now ex) Wife’s gentle snoring use to cover up the two quiet noises that I had. Now I cant cover the noises with even loud music. It seems that Ive got tinnitus from a range of causes - patulous Eustachian tube disorder (where your own voice can cause hearing damage), TMJ, normal hearing damage, and MS.
I do keep trying to pick myself up. I got used to 4 tinnitus noises and then I got five. I tried to get used to five and then number six appears for no good reason. Its not like I had spent the weekend at a music festival and fallen into a drug induced stupour next to the giant music speakers. I have even started to think that somehow fate is out to get me. Ive just had so much bad luck in such a short space of time. And I feel sorry as hell for myself which is not good.
Any ways, Ive not given up yet and posts here do help to keep my spirits up. I know that others on this website are also going through battles and I take strength and hope from their resilience. Part of me thinks I can keep going and a big part of me wants to. I have stuff I still want to do in this life, even though I know it will be to the accompaniment of hell’s orchestra. Ive started an MS diary. It helps me and maybe one day I can do something with it and it might help others with MS through the dark days.
Oh Ben, I know its s**t!!! I have the dreaded Rhematoid Arthritis as well ( I too cant spell it!!), Ive also got Scleroderma, another nice auto immune disease! I dont have tinnitus & I feel for you. Constant noise must be horrible, doc has put me on Methotrexate, it does help with both the arthritis & Scleroderma so on a positive note they can throw something at it at least. I hope you feel better soon & the tinnitus improves, try & keep your chin up & remember, that other people have no idea how bad you feel, God forbid they ever do, bet they wouldnt cope as well. Tracey x
Hi Tracy. Thanks for your reply. Maybe no one can spell rheumathoid! Hope you are doing OK atm. Im sorry to hear about your arthritis and Scleroderma and I hope that the Methotrexate works out ok. The spell check has told me that Ive spelt that wrong as well, but I suspect it has no idea.
I agree about the other ppl thing. For some reason it has become remarkably important that family understand how hard it is. Otherwise, it just looks like Im making a fuss over nothing. Anyway, I wont get into venting again!.
My hubby`s had RA for many years. He used to be carried home from work by strong dray men (brewery workers), when he couldnt even take his own weight.
He`s been on embrel for years, which is etanercept, and it has helped a lot. That was the old version of the drug, which he injects weekly.
Now it`s been changed to something else but in the same name and it has caused a flare up. His hands and wrists show lumpy signs of inflammation. It doesnt help that he has me to maneovre about!!!
Tinnitus reads like absolute hell. And having so many different sounds to contend with sounds even worse.
No wonder you feel so low…all of you.
Keep coming on here and know that we`re all in this crappy ship together, with a variety of difficulties. So we do get it, really we do.
You vent your heart out Bob!!! Does make things better! I believe our computers are the 1s that cant spell, our interpretations are fine we know what we mean!! Tracey x
I’m fascinated by this level of achievement and the huge amount of willpower it takes to get one. I’ve read a couple and find the level of detail quite absorbing.
You always make people on here feel better Polls, certainly do me! & yep, we are a unique group of “shipmates” so, Bob sod what anyone else says, believe me if they think people are worse off when dead they sound a real happy bunch of bunnies!!! Your not, & no, you wont be better off, whatever weve got we are still special​!! Onwards & upwards!!! Tracey x
Flip Bob - tough old times - I understand " it could be worse" brigade …yea it could be worse but the person dead in Syria is not me (thank God) and there is very little I can do to influence human beings killing each other, other than not killing any myself (I am tempted) Good luck
Thanks Polls. Hope u and your husband are doing OK. We all have different rooms in teh ship but its teh same cursed ship. I guess that makes us all shipmates. Maybe some land (like a cure) will appear on the horizon soon. In meantime, we all have teh dance floor and maybe free drinks at teh captain’s table.
No offence Bob (and you are clearly going through a terrible time) but have you actually been diagnosed with MS. From your previous posts you were undergoing tests and there was possibility - even a likelihood - that a diagnosis of MS was likely.
Ive had two MRIs. The first one in 2015 showed multi ischaemic lessions and the second one also showed “mutliple lesions consistent with demylinating disease”. Ive also had a range of symptoms including blurred double vision, flashing lights, hearing loss, ETD, TTTS, tinnitus, acid reflux, muscle spasms, electric shocks, pins and needles, leg cramps, dizziness, burning pains etc which Ive been told at teh hospital are also consistent with MS. Ive been told that it is probably MS but I need to have a spinal MRI and a lumber puncture. So everyone seems pretty certain that’s its MS but Im waiting for a definitive diagnosis.
If I had a black belt cloth-headed foot-in-mouth merchant of that calibre sitting across the family Sunday lunch table, there would be bloodshed, and it might not be mine.
I am so sorry that things are relentlessly grim at the moment, and that the brutal tinnitus gives you no peace - that must be particularly hard to bear and I feel faint at the thought of trying to cope with it all through an unremitting racket. This is just bloody, no question, and just getting through day to day is surely an achievement.
I do hope that, as your medical advisors tease out the various strands of what ails, that they can at least do something practical to help quickly with the most distressing symptoms and give you some relief and breathing space.