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New To This

Hello there.

This is my very first time here so please bear with me if what i say seems a bit jumbled up.

I have had MS since i was 19 (i am now 43). I always say that i have done more with my life because i have MS than i would have done without it. I think it makes you appreciate thing more. Unfortunately though my positivity seems to have abandoned me just lately and i’m concerned i’m sinking into a pity of self pity.

In November i had a nasty relapse and whilst i was having steroid treatment my husband of 21 years left me and our 17 year old daughter. The effect on us both has been devastating, particularly for my daughter. Leaving when he did meant that she became my sole carer with no help at all and in her final A level year. To make matters worse 6 weeks later a huge relaspe struck, hospitalising me for 4 weeks and leaving me with severe problems.

Obviously my main concern has been for my daughter and as awful and selfish as this may sound, i now feel i am struggling to cope with her fears, anger and reluctance to help and it is really getting me down. I have physically improved slowly but have slipped back in recent weeks. My relapses are out of control and i’ve tried almost everything medication wise. I have a carer in the morning and have had to hire a cleaner and gardener. Social Services are assessing me for direct payments but as i’m going through a divorce my financial position is precarious as all the joint savings were in my name. I have no idea how long my savings will last and i’m fearful at having to pay out so much money just to survive.

I just want the world to stop so i can get off for a bit as for the first time in my life i feel totally at a loss as to how move forward. I just feel so terribly alone.

Hi Susie,

So sorry to hear about your situation. I don’t have any answers but just wanted to

send you a big hug (((((((((((o))))))))))).

Jen xx

What a dreadful situation, such fear and despair with your condition and then isolation and worry for your daughters situation. She must be a great girl and prob much stronger than u think!! Life can seem really crap at times , enough to worry bout without finance management and concerns! Will all take care of itself in due course and u will find solace and hope in another relationship am sure . Bask in ur daughters love and her back what she puts in, good luck and hugs xx

So sorry that you’re having such a rotten time

I can only imagine what it must be like for your 17yo to suddenly become your carer (the thought of either of my two doing similar is enough to spook the hell out of me - it’s hard enough to get them to put their dirty dishes in the dishwasher!). All that pressure on you both must be incredibly draining too.

I wish I had some answers and suggestions for you, but I’m afraid all I can do is hope that better days are just round the corner for you.

Karen x

Hiya,

Have absolutely nothing that I can say that would help. I wish I could right now but will continue to think about you and your daughter anyway. Just to let you know that you are in my thoughts. With sincerity. x

S. x

P.S. I am useless and apologise!

Hi Susie, oh I am sorry you are having such a horrible time.

MS and all it`s problems makes our lives bad enough, but then to have to deal with a marriage break up is horrendous.

Im glad to hear you already have a carer and that youve applied for DPs. I have them and it`s a great help.

Dunno if you`ll have anything to pay, but as your finances are unsure, maybe you will.

I also feel sorry for your daughter. Growing up today is difficult enough, without all this extra worry.

ending hugs to you both.

((((((((((((((((((((hugs))))))))))))))))))))#

luv Pollx

Hello Susie,

So sorry to hear of your plight. A marrriage breakup is hard to deal with but especially as you have MS. I’m sure your daughter will help as much as she can along with your carer.

Sending you (((((HUGS))))) You are not alone you have all of us to support you.

Janet x

Hi Susie,

I can’t imagine what you are going through, it seems fairly obvious that the stress of the whole thing is affecting your MS, and I hope that things balance out soon.

What I wanted to say is that I was in almost the same position as your daughter at the same age - my mum had MS too - she was diagnosed when I was 16, and it took her pretty quickly - she was using a wheelchair within 18 months. My father wasn’t much use, he wasn’t at home much - (the fact that my stepmother moved into the house 3 months after my mum moved out gives you a clue as to why), so it was left to my brother and I (mostly me) to help my mum. Eventually carers were provided and that took the pressure off a bit.

This made both my brother and I grow up very quickly - neither of us did the awful teenage behaviour that you hear about, and we have both turned out as pretty decent human beings - I’m 37 now.

Concentrate on getting things sorted out, your health will be better once everything’s in place, and then you can stop worrying about your daughter, although I’m sure she’ll be fine.

Luisa x

Thank you all for the lovely messages of support. I have been quite overwhelmed by all your kindness and good wishes.

I saw my GP today who has liased with my specislist and i now have Clonazepam to take on top of the Baclofen and Pregabalin. The hope is i will rest easier at night and the pain will not be so severe. Next tuesday i will go to my local hospital for steroids again (yet more weight gain, 4 stones in 2 years so far) and i am awaiting more Botox for my foot and orthotics to come up with a leg splint that i won’t break this time!!

Does anyone have experience with Clonazepam? It’s a new one for me and so is the Pregabalin. I was on Gabapentin prior to it being swapped over.

Also whilst i feel particularly down i received my letter from the Incapacity Benefit people today telling me my time has come to be assessed for work etc. The timing is unbelievable and had me in tears earlier until it was pointed out to me that actually it may be more in my favour as i’m so very unwell at the moment. Does anyone on here have experience with this IB - ESA reassessement process? I have heard some real horror stories and want to be as forwarned as possible.

Sending huge hugs of gratitude to all of you so kind enough to care.

(((Hugs))) to both you and your daughter!

You are having a crap time of it at the moment, but all I can hope is that you will turn the corner soon and life will get back on a more even keel. With all the upset, I’m not surprised that you are relapsing. Please try to think positive (almost imposible I know) but it does help you deal with things IF you can have a more positive attitude. When look back on your life you will realise that even the worst times have been dealt with and you have come out the winner in the end - you must be because you are still here and fighting.

I am sue ‘Good luck wishes’ are winging your way from many on this site and love to help support you both. Ann

Hi Folks,

Thank you for all the wonderful messages of support i have received. My MS couldn’t wait in the end for my appointment the next week for steroids. I collapsed at home alone on 9th april and have been in hospital ever since! i have been quite ill over the ls few weeks but feel ok now and at last have IT access! I am going into the Queens Medical Centre on 9th October for an Intrathecal Baclofen Pump. They say i will never walk again, that sounds like a challenge either way you take it! My divore is still not through and we’re eagerly awaiting my daughters A Level results.

Life is such a challenge at times, i have three different solicitors dealing with three different events, divorce, mothers house sale and sueing company for negligence three years ago. All of these are coming to a head in the next 8 weeks, just before my op!!!

Today is a positive day so i want all of you out there to know that they do exist even when the world is stacking everything against you. Unfortunately though i’m waiting for the next crisis!

Take care.

Susie- sorry I can’t help. But just want to send you massive hugs. You sound amazing how you are coping with this. Sounds like you have a great supportive proactive GP. I hope your daughter does well in her a levels does she know what she wants to do career wise? More enormous hugs and support Love Min xx