I am so sorry (banned word for me oops) but I cannot carry on like this. My MS hates me more than usual and I had to go to A&E yesterday evening for a bladder wash out. I am so sick of constantly being in pain and unable to do anything.
I had an S/p fitted last year and it lasted 10 months then re-done in August which lasted until October before it got kicked out of my body again! I am currently on a urethral cath while I get something sorted not sure what will be the next option anything as long as it isn’t pads!!!
Do I truly want to kill myself ? I don’t see the point in carrying on. My husband is amazing but he cannot do anything to help me anymore and is very angry when I say these things and tells me I am like the little boy who cried wolf!! Who can I approach for some help?
I am seeing a psychotherapist through Lift I am going back for my second session this week.
hi im fairly new to all this and i think everyone on here feels like that sometimes but remember there is always someone on here that you can talk to who has felt the same at some point with MS. try to remember that every day is a new day so take each day as it comes and keep smiling
Oh Julie. I am so sorry you are feeling so low but remember we all get times when we feel like you do. Tam’s right. Remember next week may be a better week and you will hopefully feel better.
You are not rambling. Remember we are all here for you. And we truly understand.
Try and focus on the good things in your life at the moment.
l have had a SPC for 25yrs. And have hardly any problems with mine. Luckilly, l have a urology nurse who works for a agency - Wilkinsons. She is expert at indwelling catheters - and even teaches the district nurses.
She comes every 5 weeks to change it - and l have no problems. Very occasionally l do a bladder-washout -if l get too much sediment in the bladder. l can easily do it myself.
I was diagnosed with PPMS, my stemcells didn’t bloody well grow on the trial I managed to get on and now I can’t walk unaided! After much messing about, I managed to start Tecfidera but the jury’s still out on that
Yes, I understand how tired of it all you can get I just try to get used to (and expect) the changes, keep my head down and carry on. My husband is also amazing and that kind of hurts as you know what they must be missing… cos you miss who you used to be too
But you still have a place with him, remember that, he’d be lost without you. Good luck with the therapist, you should tell him/her how you’ve been feeling.
When I have my worst moments, I remember that phonecall, when my little sister found her brother-in-law after he’d committed suicide. It only hurts the people that survive so please try to look for some positives
As we all experience ms differentially I can’t even begin to understand how you’re feeling. Please try to continue remembering the positive times and how you can help others who are going through what you’ve been through before. Shazzie’ s comments make good sense, so try to remember them.
my wife has had MS for 25 years and we have just had our worst time she has had a uti and as always lost her mobility
but we found a solution that seems to work and she is getting better this week started walking even though she cant walk without frames etc
i could tel she was at an all time low and she sometimes said you wouldnt see a dog suffer like this but we talk about our family an grankids to keep her mind on good things ,
i do understand how bad it gets , as my wifes carer its so hard,heartbreaking to see her fade away over the years
but you have to be positive and dont hurt your family with desperate ways out ,be strong and seek the best life you can
Hi Julie, oh love, I really do feel for you. Life can be so crap at times, coping with what we do. I am relieved to read you feel a little better now. I got so many boosting and kind replies on here, when I had a recent melt down. This forum is the only place we can come and KNOW folk understand us. I`d be lost without it!
BUT
sounds like you have a hubby who loves you dearly, but like mine, doesnt really get it…last week i was very down about my legs…they are useless…heavy and a real obstacle for me getting comfortable. I wanted them slicing off…dont see the point of keeping `em…also my feet are a huge size 8 and stick way out from my wheelchair. I am always getting them caught on things at home and when out…broken many a shop fitting and speeded up to get away from the scene of destruction.
My hubby was furious when I said I wanted my legs off. He said theyre are so many people worse off, whod gladly swap with me…over the 17 years I`ve had this disability, he has always been mad if I mention being fed up!!!
I have an spc, after many years of accidents, I tired an in-dwelling catheter and hated it. The spc is much better…but not without problems sometimes.
Have you thought about having botox into your bladder? It could help. See if you can speak to your urologist about it, eh?
Chin up lass and hang in there…we are all here for you, you know?
Thanks Polly I have had botox a lot over the last 10 years and it was re-done when I had the S/P resited. If I could self cath while sitting it would be no worries!!
I am feeling much better this evening and ready to take the new week on in usual Julie style lol
Thanks so much sweetie I think I have turned the corner xx
Julie - I fully understand and you have made me feel guilty about my sadness at the moment because my MS is fairly stable…every now and again, especially the autumn time, i would get very down on it and am on cipralex again to alleviate my anxiety and dark days…go and speak to someone like your gp or MS nurse and get help…alot of us MSers struggle with depression and its not nice and sometimes i think if its really worth it???
Hi new to this forum, i am a 53 year old female, and have had mild symptoms of MS for 10-20 years, ignored the lot as i was in denial (as my younger sister had MS for the past 30 years) and it was not happening to me. Heres a laugh for you all i was an orthopaedic staff nurse and believed everything the Dr told me, Ha ,Ha big mistake. I started to deteriate in June 2011, had an MRI lumber scan and was told i had a root nerve entrapment L4-L5 lumber spine,it was not to bad and did:nt require surgery at present. Recieved some physio for the drop foot i had and the numbness in the left leg.
Went back to work full time 8 weeks later, some days i struggled, but being a big tough cookie i pushed myself to the limit. i worked extremely hard in a very heavy busy ward, did long shifts starting at 07.00am - 19.30pm, then night shifts alternative weeks were i started at 19.00pm and finished at 07.30am (looking and feeling like a burst couch,). We had my daughters wedding coming up and kept pushing myself to the limit.
Any way the wedding was a huge success and brilliant day in (Sept 2011). Now fast forward to Nov 2014 and my granddaughters 1st birthday, i was admitted to hospital. i became numb from the toes to my chest, balance was completely gone, eye site was blurred, arms, face, mouth, tongue, all had pins and needles coming and going, electric shocks travelling up and down my spin, which sent painful shocks to my whole body. bowel and bladder problems, fatigue with a capital F and a whole host of weird and wonderful things.
I received MRI scans and a lumber puncture (the NICE guidlines protocol) all sorts of weird and wonderful bloods taken, then after 2 weeks was diagnosed with RRMS, given 3 doses of Steroids, were upon my eye site improved and i was discharge home.
After 6 months of my GP chasing up referrals that should have been done and were’nt, i eventually got to see the MS neurologist and the MS nurse in the same week. they told me, all your symptoms will subside in a matter of weeks or months, and not to worry i would be back to work in no time.
Well its now one full year, all the symptoms are all still there, am practically house bound, i only go out for Drs appointments, and work assessments. My work the NHS is now in the process of terminating my employment due to ill health. i cant blame then as i know i will never work again due to this horrendous MS and it symptoms.
i currently hobble about the house, use 2 crutches short distances and a wheelchair if some poor soul wants to take me out for the day. Now thats a laugh, the longest ive lasted it 3 hours outside my house in the last year.
NOW HERES the punch line, i never let it get me down, i dont get depressed, i think to myself it could be worse, it could be something deadly. someone said to me “its terrible, your such a wonderful person, why you” that one i laughed at hysterically about, and said well why not me. Thats what i call a good Scottish sense of humour.
IT IS A TERRIBLE DISEASE I DONT DOUBT IT FOR A MINUTE, PLEASE DONT TAKE OFFENCE AT ANY OF MY RANTINGS, but i will live to tell the tail, play with my grand daughters, now three of them. My husband , son, daughter and good friends all keep me going, and keep my spirits up.
PS excuse the writing and the spelling, what do you expect iv got double vision.
I read your post with one eye covered so that’s OK
I am chuffed for you at having a great celebration in 2011. I managed to keep things together until just after my wifes big birthday bash in 2008. It is great to look back on the good stuff.
If I do start to feel sorry for myself or catch myself whinging or ranting I know for a fact that there are vast numbers of people who would gladly give their eye teeth to be in my position. (this does not stop me from indulging in the odd moan)
I am gradually learning how to “shift the goal posts” Stuff that would have made me say “that’s it I quit” 12 months ago is now incorporated into my regular day.
I found that by having a mobility scooter I can on occasion get out of the house to feel a bit of independence.
Todays motto is “adapt and thrive” or failing that “adapt and survive”
Good morning to all my new friends. Today will be a better day. No sadness, only determination and positive thinking. What’s that I hear, someone said aye that will be right.
You are not ranting. You’re doing what we all do from time to time. Feel free to rant on here. We have all been there.
I get through by trying to keep a positive attitude and I try and have lots of humour in my life. This really helps me cope. You sound like you are very positive about things and like me you get out and about on your scooter. I’m looking forward to blinging mine up for Christmas.
I retired through ill health from the NHS in 2012 at the age of 53. I was devastated having to leave my job but wow it has helped so much being home. If you need any advice on this then PM me (send me a private message) and I will try and help.