Hello all, i have had MS for 20 plus years. First RRMS and now SPMS. My physical disabilities have been getting much worse this year with vision, balance, pain and mobility all going down hill rapidly. I am now getting very low moods and wondering at what point i call it a day? I don’t see any neurologist any more (last one i saw was 6 years ago and he didn’t even bother using my name, i was just another case/patient and he had a “very full list”).
How do you come to terms with going down hill? How do you come to terms with a wasted 22 years of life? Given the inevitability of the outcome and the day to day struggle for me and the pain caused to my family and friends watching me getting worse, is “pulling the pug” not a sensible option?
Hi Pillbox. Sound like you are having a really hard time and are in a ‘bad place’. Do you have an MS Nurse or team you can contact about your worsening symptoms and about possible new Treatments?
More generally, years ago I contacted my GP about anxiety and depression brought on by MS - either directly ( which can happen) or indirectly by basically feeling low about having MS. I now take a low dose of citalopram which has made a difference. I’ve also taken myself off for counselling sessions which do help - as you say having MS is a lot to come to terms with.
When in trouble or having hard times my inclination is to grab all and every help I can get! Whether from MS team, GP, counselling or whatever. For what it’s worth, I woild contact the team and your GP ( and I know from my experience that there are counsellors who specialise in counselling people with health conditions including MS )
Friends and family generally like and want to care - it’s human nature and I’m sure they would care very much that about how you are feeling. My aunt died with MS and to the end ( in her early-mid 80s and bed bound for her last 2 years) her friends would come to see her for chats etc and a bit of a laugh and reminiscence!
How do you come to terms with going downhill. It might be just my nature but part of me just says ‘sod it, I’m just going to keep going, trying to do what I can and taking enjoyment from what I can’.
Does any of the above make sense or of any help?
Hi, thanks for your reply and for carring. Can hardly see my screen right now but, will look again when my eyes clear up. P
I couldn’t agree more. Anti-depressants really can be a blessing. We have MS and it’s not good. I agree that we need all the help we can get.
I’m sorry you are feeling so low @Pillbox. The transition from RRMS to SPMS sounds as though it was difficult to come to terms with.
Do you not see a Neurologist anymore by choice, or because they don’t feel they can offer any further help?
Can I ask if you are in contact with an MS Nurse? So far as I know, everyone with MS has the right to ongoing support, even if there isn’t much in the way of actual treatment.
You mention pain being caused to family and friends because you are going downhill, but perhaps they are just concerned and want to know how to help? Do you receive any support from them?
I can relate to one’s mood being so low that you feel ‘what is the point’, but there is help and support out there if you want it. Feel free to message me if you want to talk.
Kind thoughts, Willowtree
Hello, I’m sorry to hear you’re at a very low mood with MS right now.
I too have had it 20 or more years.
This whole year off-sick, I feel my RR shifting to SP, when you know you know right?
Personally I don’t think of life wasted: I believe it’s already mapped out, you just need to follow the path.
Hope you feel better again soon, I like to think: today is always the first day of the rest of your life.
Best regards,
JP
Yep been there. mine started 2000.
i have PPMS so never catch a break.
Now i am about 7.5 on the disabiity scale and will be moving up past 8 before the end of the year i think.
I rang my Local adult social services team and i had a visit by one of them, who did a full assessment. i was granted a care package a lot of it based on my low mood and my care team have to engage with me i have 2 visits a day, the girls are often different but i do get a few who come regularly they are all from asia, and the african continent, and we have such fun. Its a teaching curb for all of us, i teach them about life and they teach me about GHANA, KENYA, NEPAL, PAKISTAN, SRI-LANKA, INDIA. I have pilots, students doing uni courses in things like cyber protection, advanced physics you name they do it. i have 2 males who put my lunch up.
its changed my life. i was ready to give it up, eating less and less, and feeling downer then snakes belly. i have my pen pal in USA who MS too and we keep each other supported. yes i have 2 daughters but they have their own problems.
everyday i look out of my window (i am housebound), and see birds and some new ones, i try to find good things in my life to enjoy. i have my own wildlife youtube channel.
oh i got a rescue dog https://youtu.be/AeSVNAmRDSM
she keeps me entertained.
yeh i am in so much pain especially in my feet and burning legs and fatigue and exhuastion. my life has changed so much but i draw on my experiences from my life to help me keep going. to harm myself would just give my family too much pain, and i cant inflict that on them.
i take extra vitamin D now and every morning i have ground flaxseed in my breakfast, which is helping with other issues.
HELL i decided i am not being a statistic. i have lost friends to cancers who would love to be alive now enjoying themselves. Yes i am depressed, in pain down, but decided its not my choice when i go. I love my family and would miss them too much and the thought of them crying over my coffin is too much to bare because i did that to them.
Get in contact with your neurologist or the team, talk to people like you are now get moving, there is still time to have some life, which others would love dont throw it away.
your not ready if you were, you wouldnt be reading this.
xxxxxx CC.
Hello love.
This chronic MS mallarky is a hard burden to bear, I know. I’ve had PPMS for26 years .It took my mobility quickly…bladder and bowels accidents were common place.
I bumbled along and waited 22 years for a diagnosis.
I have a good hubby, 51 years married. He’s not in the best of health, but along with 2 carers, takes good care of me. I need help with almost everything.
2 years ago, I lost my oomph! I just couldn’t see at way forward.
I felt totally lost, bedraggled and empty.
You know who saved me from further despair? Jesus! Our wonderful friend and Savior.
I still struggle, but feel my life has been greatly enhanced. He is an amazing constant friend. He is there for you too, if you just ask him.
boudsx
Hello all, just a quick thank you to all those who replied to my post for their time and concern. You have given me something (s) to think about.
Pillbox (so named because when i move, I rattle with all the pills inside me)
Hi low mood is a regular visitor i tend to just sleep its not easy but some days its just to hard to fight today i slept until 1530 i still feel grim I’m secondary progessive MS ill be 60 on friday and thinking whats the point. I’ll probably go back to bed giving myself a good slap and dream of some positive reasons to go on we all do it at some stage of ms but we can’t let it win plenty of support on here we know how you feel. Sometimes a good moan helps keep strong 
Hi Pillbox
There’s so much I’d want to say and I’ve typed this message a dozen times and can’t get it right.
But as a carer for my mum who was in your situation for the last 5 years of her life with ms, if she’d have pulled the plug I’d have felt such a failure. You feel you are causing your family and friends pain watching you suffering and yes it is hurting them that they can’t make you better but pulling the plug would cause them a lot, an awful lot more pain and guilt, it honestly would. Try and take strength from them to carry on, they love you and want you in their lives.
The other side of the coin is I also have ms and a cupboard full of medication and totally understand how you feel, I’ve just not got the courage.
Right I’m pressing send before I delete this again!! Big hugs x
Thank you all (again!) For your loving care. The jury in my head is out right now about what the next move will be. I guess the issues for me are,
I’ve never been frightened of death, given there’s not a lot i can do about it anyway so, why worry? The quality of life however (everybody’s) is, to me all important, when the negative outweighs the positive then just “hanging on” seems a little pointless. Family and friends mourning will, maybe, happen regardless of the date, next month or next year is it that important when? The idea of loosing all my independance and dignity which i have come to take for granted as an adult is not something i want, or inded need to experiance.
But, meanwhile, thank you everyone for just thinking it’s worth the time and effort to send your support to me. P
Pillbox. Can I urge you to contact the MS Society confidential helpline (0808 800 8000, helpline@mssociety.org.uk )
I can see and fully sympathise that you are feeling down but as they say, don’t let the b……s drag you down.
MS is a real sod and I think we all deserve a medal and should pat ourselves on the back for living through it
A long time friend of mine died of cancer recently and pretty much to the bed bound end would say there is always music to listen to, always books to read, always the garden to look at and always my family to love
Just to say I really admire your reply. Quite inspirational!