Hi all,

i have not be on forum for a while, mainly cause thinking about MS and the way it controls my life is making me so drepressed and I feel so alone and am back to sitting crying at night when my girls are not around.

Ever since I took my attack over 2 years ago my life has been turned upside down. I lost most of the sight in my right eye which means I struggle with everyday tasks. The attack was so bad that I am still suffering badly with migraines, pins and needles, numbness, dizziness, burning sensation, horrible fatigue, depression and may other symptoms. I’ve tried tablets that would work for a short time and then the does would have to be upped and now I have decided to come off all drugs because off side effects and a massive weight gain.

I feel lost what to do with symptoms. I’ve spoke to my MS Nurse well 3 different one cause they keep changing me and not giving me reason why. They don’t seem to give me any answers except you need to go back onto some sort of drugs. At moment I don’t want drugs as don’t fell they are helping.

i also tried speaking to my neurologist but my one year appointment when to 16 months and then that was cancelled and now it’s nearly a 2 year appointments.

I walked around life just wishing for bedtime each day. I have no life and single mum too two beautiful girls. I feel like I struggling to deal with them and get upset cause my oldest is my carer. The girls goes to there dads most weekend and all I do is lie in bed or the odd time I go out with friend and take photos but then once I am out for hour I needing to go home.

Sorry just struggling and don’t know what to do. I

hi anon

you have my full understanding and i’m very sorry that you feel so lost and alone.

drugs and meds are entirely your decision.

i came off all the neuropathic painkillers because the side effects were awful.

just take my tecfidera these days.

i get a lot of nerve pain but just the same as before starting the neuropathic painkillers.

are there any local groups because isolation will not help your depression.

if you have access to an ms therapy centre, then go there.

mine is brilliant, choose your therapy and attend that but also have a good chat around the table.

coffee and cake is always on offer and it is definitely not a scary or depressing place.

the people who go there aren’t either.

your ms nurses will want you to take a DMD but again this is your choice.

i started off on copaxone which is a daily injection but took just 5 minutes.

then switched to tecidera, 2 tablets a day.

neither intrudes on daily life.

if you want to chat one to one, please feel free to private message me, be warned i can talk the legs off a donkey!

Hi, I don’t like to think of anyone thinking that they’re on their own. Especially when they’re struggling with MS. I understand how you feel about all those pills and putting on weight. I don’t take any unless I’m convinced they’re going to help. It sounds to me that you’re looking for help you get motivated that doesn’t involve medication. Doctors and nurses aren’t very good at this side of things so you need to look elsewhere. I can imagine that bringing up two girls on your own is tough enough but you need to make time for yourself. Carole’s suggestion is spot on. Put aside a couple of hours a week and go to a coffee morning, join an exercise group (they’re always good to lift one’s spirits) or a hobby or craft class. Meet other people. Some will understand what you’re going through and be supportive. And you know that whatever you’re feeling, there will always be someone on the Forum who will know exactly what you’re going through and understand. Best wishes, Anthony

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Hiya, both Carole and Anthony are spot on. I do yoga which really seems to help, and gets me out doing ‘me’ stuff with non-MS folk (or at least no-one has mentioned having it). The lady who runs the class is excellent and quietly provides me with a chair so I can get my balance back if necessary or have a dizzy moment or two by holding the back, and she tells everyone to go into Child’s Pose if we need a break and it’s not just me that does that! I didn’t know any of the ladies before I started but now we all have something in common.

What I’m trying to say is that there is something for most of us out there.

Tippy x