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So incredibly unhappy

I am so very very depressed. The John Radcliffe have taken me off their list and closed my case, I am not suitable for DBS as my stupid MS hates me so much and is really active it would appear (unlike me).

I need to get back on a DMD but would prefer an oral one as I am no longer able to administer an injection. Any suggestions gratefully accepted!

I am so depressed I want to do something really stupid, only thing stopping me is my amazing husband as I don’t want him left with all the backlash from my suicide.

I am taking plenty of antidepressants, but nothing is giving me back my love of life. I feel I am just marking time, I would love to get back into work but unable to find anything suitable or accessible.

Please help me xx Jules

Hi Jules

I am so sorry to hear this. you sound at the edge of despair, but whatever you do please don’t do anything like as you describe as that is no answer to your problems. if anything it would cause untold misery on your husband, and it sounds like he doesn’t deserve that.

you don’t deserve to have MS- none of us do. however there are choices:

1] go to your doctor and ask for a neuro referral for your MS. there presumably must be a reason why the hospital has refused your treatment, but i understand all UK citizens are entitled to treatment. you don’t mention why you’ve been refused treatment (unless something serious has hit the fan i didn’t know that hospitals were even allowed to refuse treatment), what type of MS you have or what treatment you’ve taken before, aside from an intolerance to injections. do you have the services of an MS nurse who can discuss treatment options with you? i will be going on gilenya as rebif was lousy for me, and i understand gilenya is one tablet per day instead of the rebif injection.

2] whilst you’re at the doctors, tell him/her of your worsening depression- it is a common side effect of MS, and you are entitled to health care provision to alleviate the condition, or at least the symptoms

3] most importantly talk to your husband. he must know something is wrong and is probably scared witless to ask you in case he upsets you or says something wrong (i am a husband as well, so i feel his pain!). without wishing to sound like a cliche, a lot of problems can be helped, and certainly a lot of affirmation made by talking.

4] phone the MS helpline- when i was first DX they were great to me.

i really hope things get better for you soon. as much as it is painful to do, you must for both your sakes try to act on this current situation as it will not get better otherwise. i speak from experience having suffered with depression for 18 years- at my lowest when all i’ve wanted to do was stay in bed, kill myself or do a reggie perrin, i have realised that only through accepting help and being proactive in seeking it.

take good care of yourself, with all my very best wishes, fluffyollie xxx

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hi jules

sorry to hear about your unhappiness.

fluffy ollie has given excellent advice.

the oral dmds are gilenya, aubaggio and tecfidera.

i’m just 3 weeks into tecfidera and i don’t miss injecting one bit!!!

please accept these hugs (((((xxx)))))

carole x

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I second the good advice from fluffyollie and carole.

It is a nasty blow, when a treatment option that looked promising turns out not to be suitable or doesn’t work for us. As if MS didn’t give us a nasty enough time all by itself. Sometimes life really can feel like one damned thing after another.

I hope that you can get on an oral DMD soon. Something positive happening can really steady the ship, and we all need a bit of that.

Alison

Very good advice from everyone above and iam sure you will get loads more i can only add that counselling has helped me and though i still have low moments esp when weather is cold and grey the thought of how upset my husband and family would be keeps me thinking positive. Please try to seek help of some kind and just talk to someone anyone that will listen to how you are feeling and a good cry always helps me. Take care and know that you can always chat to us all on here.

Katy

Hiya Jules - I understand the “darkness” that accompanies MS - I have been on and off Cipralex for the last 10 years - I really want my happiness back and cipralex has helped me to gain a bit back again.((((((((((hugs)))))))))))))) please hang on in there.

Stephen xx

Hi Jules

You’ve been given great advice so please give it serious consideration. There is definitely help for you, just pick up the phone.

Talk to your husband about how you feel, keeping thoughts locked inside just helps to magnify them. You say you have an amazing husband, so let him carry, protect and support you until you are strong again.

((((((Hugs))))))

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Thank you so much fluffyollie I truly appreciate your kind words, today has been better, I have been talking more about how I feel. I actually went out this morning husband dropped me off at my friends house on his way to work, I forgot how wonderful the military community can be!! Had a bit of a choir coffee morning which was super.

I have decided to make a list of my “trigger” points and will make a concerted effort to begin addressing them. It is more difficult being far away from my family now, but again that is the joy of the military life!!

Much love Julie x

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I will go to my GP and ask her to refer me again to the neuro at Southampton. Thank you Carole I appreciate you telling me the names of the tablet and the hugs are gratefully received Julie xx

Thank you Alison I appreciate your kind words xx

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Thank you Katy, a better day today by far xx Julie

I think my meds are pretty good right now Stephen. It just becomes so overwhelming when I want to do more than my body will allow!! Thank you for the hugs they really have helped today xx

Thank you Blossom I really appreciate the hugs I feel very loved tonight!! I have spoken to my hubby he tells me not to do it in the house typical squaddie!!

Lots of love Julie xx

I had good news from DWP today they have upped my personal care element of DLA it has been upped to high rate indefinitely!! So now high rate both elements!! Boom, love Julie x

wonderful to hear that you are now bubbly again!

keep up there julie

carole x

Oh love. I do feel for you. Living with a chronic condition/disability certainly ain’t no picnic!!

But seeing as your DLA has been increased, it has cheered you a bit. I know money sure isn’t the be all and end all, but it does make us more comfortable.

This time of year is notorious for depressing us. What about planning a trip out or a couple of days away?

Lots of love Polly xx

u

Oh Jules.

What a miserable time you have been having. We all get those horrible days and sounds like you are now in a better place for the moment anyway. That is brilliant news about your DLA. Sounds like it has really cheered you up.

Hope you manage to get DMD tabs to help you out a bit. Be thinking of you.

Just sending you (((hugs))) and remember we are all there for you whenever you need us.

Shazzie xx

I’m on a tablet for my MS – Azathioprine. It’s usually used in people who have had an organ transplant to lower the immune system. Nearly 4 years but I have SPMS now. Only downside is that it is a carcinogen.

Allve good advice from above. This forum is really a great help and to know that there are such good people who care out there is comforting to say the least. I was here a couple of weeks ago feeling so so lonely and hiding myself away, I was given solid advice and a friendship from caring people who knew exactly what I was going through. One lady and I send pm to each other with our “happy thought” for the day. It really has helped me to appreciate the good things in my life instead of focusing on the bad things and just getting depressed. My son has asked us over for our lunch today - he lives next door so I dont have far to go (haha) thats my “happy thought” for today! Hope it helps pet :heart::heart::heart::heart::heart:

Thank you Carole amazing what can change in 24 hours really!!