Hi all hows everyone doing with their ms, l was diagnosed 1998. I just now feel like giving up. Any body feel same.
Just one thing after another
Hi Kylemax,
I’m sorry to hear this is the way you feel, MS, particularly when you had it so long and it’s progressing. I was diagnosed in February 2007, apparently I showed symptoms since 1990, I went straight in as SPMS and like you it’s just one thing after another, no quality of life for me or my husband who’s my carer, UNPAID GRrrrr. we hardly go anywhere, certainly no holidays. This year until now I’ve had 3 bacterial infections, one which was double pneumonia, 6 day’s in hospital, I’ve another now and to be honest I feel bloody fed up, but I won’t give up, no way, so please don’t give up, dig deep, not easy I know.
Sending good wishes your way, take care.
Jean x when you’ve
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These comments make me feel really sad for you. I agree, don’t give up, but I’d add that there’s light round the corner with new drug development work all the time and it IS possible to manage your MS in ways which are based on kindnesss and self-compassion. Mindfulness meditation is a key tool for me which I find invaluable.
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Hi ClaireGjetle,
I myself do mindfulness and try for a quiet life, not easy at times. I hear what you’re saying about possible new meds, but sadly at the moment there’s nothing there for progressive MS, otherwise I’d be on it, there isn’t even anything for the pain I’m constantly in, day and night, I can’t tolerate the meds for fatigue, but who can, I’ve read so many posts on here where it hasn’t helped anyone and I could go on and on, but I won’t. So please forgive me for being cynical, but this is just the way it is and I cope with it the best I can, that’s all we can do.
All the best Jean x
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That’s interesting, I’m around the 25 years mark of having MS too and currently experiencing this recurring infections stage of the disease, it’s so good learning from other sufferers about these things.
Best,
JP
Morning, so this is my problem too, one infection after the other, so annoying and they take so much out of us, good luck everyone and try and enjoy your day.
Jean x
Hi msCarer, I have a great GP, good MS nurse and there is a local MS society branch if I need it, but over the last 18yrs I’ve built my own support group up, hubby, family and some friends. I’ve already tried so many meds and they haven’t worked. MS just advances and takes over, but hey I know this, I apprieciate your concern, and from reading some of your replies you’ve a lot on yourself, looking after your wife, I wish you all the best.
Jean
Hi MScarer, I like your train of thought, we are sadly on our own and it’s not easy. But I’m very stubborn, as is my hubby, but I wonder how much longer that will last, Good wishes to you and your wife, I really hope she is the best she can be.
Jean
I feel the same,i was diagnosed in 1992 so i have had it 32 year now. I can cope with my MS i have managed all this time, i have been very ill at times,over the years but always got better given time and i have tried avoiding stress all these years,which i have not been able to do,i could write a book about the stressful life i have had lol.
But this last few month i feel like giving up,i am worn out with having had to fight this MS all these years. I have a daughter that has huge mental health problems,and i have 2 non verbal autistic grandchildren too that i try help look after and ihave to fight for support for them,which is getting harder to do now.So i really have had enough.I dont get any support from anyone because everyone thinks i am so strong,because i am a fighter but everyone has a breaking point and i actually think i have reached mine.
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Hi mrsJ,
It sounds like you’re having a really rough time and that you’ve got a lot on your plate.
Have you considered speaking to your GP or MS nurse about how you’ve been feeling recently? I know it can be difficult to get an appointment, but it can be really worthwhile to see what support’s available.
My mum’s had counselling related to CBT and mindfulness (on the NHS), and is on medication to help with her mental health issues. She’s had a lot of success with them.
Hope you’re able to find some time to care for yourself.
Alex
Hi greenhouse/Jean,
Have you looked at any of the recent clinical trials? My mum has secondary progressive MS and recently completed the ChariotMS trial:
I don’t know your particular circumstances, but it may be something to look into. There are contact details on the link above. The team at Salford Hospital were lovely with my mum.
Hope you’re well,
Alex
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Hi CarerAlex, thank you for these details, I will certainly have a look. Take care and thanks again,
Jean
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WARNING SOME OF MY LIFE DTAILED
100% I feel like giving up. 21 blind- eventually came back - diagnosed aged 24! Taken off Beta Inteferon because liver was failing, heart surgery at 33 -IV Steroids caused my heart to stop!! was told it would take 30 mins -took over 3 hours - even felt surgeon stitching my chest back up. Psedomonas off legs - fitted a large catheter rather than a smaller one - leaving me nowhere to go because urethra has stretched!! Sizeable pulmonary embalisms both lungs, pleurisy and collapsed lung!! Off legs for nearly 2 years and managed to learn to walk again and then 2 years, 2 months and 22 days ago the physios were due to bring zimmer round.
I WAS SO CLOSE - then the wheelchair malfunctioned catapulted me in the air and smashed me on the brick driveway- I WAS PROMISED after surgery they would get me up and walking.
Knee smashed in many places, 13 hours of surgery, first time of getting covid on filthy trauma ward, anaphylaxis, HUGE mess up with blood transfusions.
The NHS dropped me for physio, got a private one - he hurt me- been doing nothing but try tp recruit one.
My husband 21 years anniversary tomorrow is now my main carer and that kills me- the things he has to do for me is repulsive - im ceiling tacked hoist - ive been neglected by Occupational Therapists by Council - the slings ive got are condemned and even safeguarding havent contacted me. Ive had to put cameras in every room of my property because of incompetent, verbally abusive and physically hurt me district nurses.
Technically Ive died a few times to say the least - Im so close to giving up - it hurts - whats stopping me - IM LIKE A BOXER IN THE RING THAT KEEPS BEING PUNCHED AND GETS BACK UP AGAIN!!
I JUST WON’T STAY DOWN.
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OMG charlotte04, what a hell of alot you’ve been through and are still going through, my god love I’ve no words that express how shocked I am for you, the only thing I can offer and BIG ((((((HUGS)))))) and I know they won’t do any good, but know you are not on your own.
Jean x
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OMG that really is a lot that you are going through,bless you. I have no words,just sending lots of hugs and wishing you well. xx
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It’s a tough station and every so ofthen I feel like giving up living with this chronic condition MS - if it’s any consolation we are all in the same boat and we all get fed up - I was diagnosed 24 years ago - RRMS but it’s with me all the time
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