There was a time not so long ago, that I didn't want to live, but I didn't want to die either. I watched my children interact with others and not with me. Life was like being outside in the cold and looking in. I have no doubt that today I would have been bed ridden. I can't believe how bad I was and how desperately sad I felt.
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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
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
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
14 Sep 2013 at 7:48PM
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
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