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Little ray of sunshine gone

Hi everyone, the small window of Rachael feeling good has gone again. She is constantly fatigued, sleeping 12 hours and she is still shattered, only sleeping 4 hours some nights as pain keeps her awake and she is not worth a button, headache, body pain, numbness in right hand so when trying to get fork to mouth sometimes misses and pokes herself in face with fork and food so having to use other hand and food falls off the fork, can’t cut up food so have to help, teary, fed up and bored out her tiny skull. She is spending up to 23 hours in her room as can’t get comfy sitting in living room so only comes out to eat or use bathroom. She has saw her friends once in the last month and that was them meeting up in one of the girls houses which is half way between where they all live, so she had to shower in morning, rest all afternoon, get ready, then rest some more before leaving the house for a few hours before I go and pick her up and she is so fatigued by this time she fell asleep in car on way home. Her life is pathetic, I feel so scared, alone and sad for her. Linda x

hi I feel for you. I can’t remember how long it has been since Rachel started this last relapse but I want to giv you some ppositive thoughts. I was in a similar position for 3 months when hardly left the house at all and spent 2 weeks in hospital and has taken me another 5 months to be able to get back to work full time and then I only manage the office 2 days a week. I am still exhausted and spend 90% of weekend in bed but thi is iimproving every couple of weeks. I was feeling like my life was over but now have worked through this. Taking each day as it comes and it will get easier. Be positive you had a good holiday and that will have really taken it out of her so she is now having to compensate for using that amount of energy. Big hugs Barney

Hi Linda

Hang in there. Like Barney says, there is still time for improvement. Rachael has had lots of relapses in such a short time and she needs lots of sleep for her body to recover. Relapses can take a year or more to completely recover from and now that Rachael is on Rebif she hopefully won’t have so many so frequently. It takes a few months for Rebif to build up in your system so hopefully she should be protected now (I can’t remember when she started on it) and can concentrate on just getting better from the relapses she has had previously. She must remember not to overdo things when she is having a good day though or she will need several days to recover again. It took me a long while to learn that rule - the hard way!!

Hugs to you both and hoping Rachael turns a corner very soon. Starting on Rebif made a huge difference to me and hopefully it will do the same for Rachael.

Tracey x

Hi Linda Keep doing what your doing for Rachael, your a big help for her. You have both showed what has been possible over the last the few weeks i.e. feeling well enough to go on holiday etc. These times will come around again and hopefully soon now that Rachael has been building up on her meds. I had a couple of aggressive relapses which led to me feeling very low earlier this year and with medication, 4 weekly infusion of Tysabri, they eventually wore off and now im feeling much better, im sure this is what happens to most people with this horrible disease. Hang in there and i hope all is well again very soon. Mick x

Hi Linda (Rachaelsmum). There’s no question that those of us with MS are on an unknown journey into the unknown. It makes me so sad that someone so young is being made to carry this heavy load with them through their life’s journey. But, that said, some very wise words have been passed to you by Mick, Tracey and Barney, so there isn’t any more I can add. However, I’ve just returned from a week in hospital having treatment and I met a bunch of beautiful people whose journeys have all been hellish and they have all felt the same, at some point(s) . Very importantly, each of them, including me, have reached the light at the end of the tunnel (until the next relapse). Rachael will too. Lots of positive energy beams are heading in your direction. Best wishes and love from Tracyannxx. Keep strong!!!

Sending mega (((((((((((((HUGS))))))))))) to you and Rachel.

I’m not too sure what i can say to help except my thoughts and prayers are with you both!!!

Rachel will get through this!!! She has an amzing mum who supports her and gives her her all, and she has such willpower.

I take my hat off to you both for dealing with this disease as you have!!! my hubby and i are still coming to terms with it.

I understand the friend thing… hardly see my so called friends now ( i know im 34 and its a bit differnt at my age) they seem to have gradually stopped meeting up with me which makes me sad and i feel it’s because of the MS they know i get fatigued but don’t even offer to come to mine! This site has more people on here that i could count as friends now!!!

Her life isn’t pathetic it’s just been put on hold for a while till the meds start building up and you get over this mountain!!!

I wish i could meet you and Rachel!! She is an inspiration to me about nt giving in or giving up she just keeps trying!!!

Kate x xx

Hi Linda,

Just like everyone here, I am amazed at how you and Rachael are coping with what you are going through. You both strike me as strong women and you will get through this. She will have her good days and she will have her bad days but as she gets older and more in tune with her condition, hopefully the good will outnumber the bad.

I was 30 when I was diagnosed and even then my MS is so mild as to be more of an annoyance than anything so to see how well Rachael is managing with her injections is inspiring. There is no way I would have been as capable at her age. And she has her mum to thank for her upbringing which has allowed her to be this way.

I know you are both probably feeling very low at this point but remember you have just had a good window and those will come again.

Massive hugs for you both

Kelly xxx

Hi linda

we havent spoken before -I haven’t been on the site for a long time

I hope you are doing ok and that Rachel rests well

I have had ms since 1986 and at long last have accepted that sometimes I need to sleep a lot- ridiculous amounts !!!

and i have got such a lot to do in my head…still sleep overtakes and what’s to be done can wait.

Am waiting for it to pass -it always has done previously even if it has taken months

Hoping Rachel feels better

thinking of you with positive vibes

pat xxx

Hi Linda, first off, thankyou so much for the message you sent me in reply to my post about my sister and her broken ankle. Your words are kind and true.

Now about you daughter Rachel. As everyone one says, hopefully the meds will kick in soon and ease her fatigue and pain. Its a cruel twist of fate that someone so young, is hurting so badly. But her blessing is in that she has you.........a wonderfully caring and loving mum. Her pain visits you twicefold.........thats the nature of being a good mum.

As long as you have her on the right meds and her MS nurse is in close contact making sure she has all the help she needs, from the powers that be.

I send you my love and thoughts.

luv Pollyxx

Thank you guys, trying to keep chin up and smile on face for her so she worries less as I know if she see’s I am worried she knows things are bad. Sitting watching a movie last night and noticed my face was wet, just sitting staring at telly and crying. Get so little time to myself and feel as though I need to go somewhere and scream and cry by myself to try and get it out but can’t move for Rachael, she is so scared to be left by herself. Even though she spends most of the day in her room if I make my way near the front door she is shouting down asking if I am leaving and if I am not to be long. I attend weight watchers and when I went on Tuesday she begged me not to stay at the meeting to just get weighed and come home again, her wee face is so sad there is no way I could refuse or leave her for any time. Linda x

So sorry to hear that things are not so good. I agree with the good inputs you have had. It is nust unbelievably tough for you, trying to shepherd your child into young adulthood with the host of extra difficulties that MS brings, while dealing with your own distress in private. I really feel for you. Alison