Hi, I have not posted in such along time but today I has been a particularly bad day. I just feel terrible. I have to say I have not felt this low and sick since my diagnosis of RRMS nearly 3 years ago. Today I got a phone call from my GP surgery from one of the nurses stating they received a letter from my MS nurse that I need to get my bloods done with them as there are no appointments with her at the moment. I know she is very busy and I am glad she took the time to sort my bloods out. But I have also not seen my neuro in well over a year. I had my beautiful baby boy in October last year and was told the neuro wud see me 2 weeks after I had him as he was afraid I wud have a major relapse and wanted to see me in case. My son is a few weeks off being 1. I have also not had a yearly review. I just feel totally left on my own to deal with my MS and with my new medication (Tecfidera, I was on copaxone before I fell pregnant). I constantly feel sick and taking flushing with my Meds and my tiredness is at an all time high. My husband still hasn’t come to terms with my diagnoses and he just doesn’t talk about it with me. I think it’s his way of coping, just pretending it doesn’t exist. I feel soo alone today when I shud be the happiest girl in the world with my beautiful baby boy and my husband of over 5 years and we moved to are new home 3 months ago. I feel so unworthy and undeserving of it all feeling like this. Sorry just need to talk to people who understand. Thanks
Hi Bean
Sorry to hear that you are feeling down. I bet lots of us recognise that feeling of having a lot to be thankful for, but still feeling down in the dumps. You have had some huge changes going on in the past year - having a baby and moving home - great things but also really tiring and unsettling, even for someone without MS!
Whenever I feel low, I try to identify the things I can do something about. Perhaps for you that could be making an appointment with the neurologist or MS nurse - making sure you get that post-pregnancy appointment and review of how Tecfidera is working for you. Healthcare professionals are always busy and under pressure but once we are in the system, and it sounds like you are, we can take some control in making sure we get the attention we need. I am sure it is not intentional but it can be easy to fall between the cracks.
And maybe picking your times to have a chat with your husband to explain properly how you are feeling. It is tricky with families but I am convinced we have to talk about the situation properly from time to time - to make sure people have some idea of our condition and how it affects us, which even we don’t fully understand!
This forum is a great place to talk to people who really know what you are going through. The MS Society helpline is another opportunity you might want to try.
Someone once said to me that life is a marathon, not a sprint. Thinking about this sometimes helps me to relax a bit and go with the flow - and not expect quick answers or solutions.
Sending best wishes and positive thoughts your way. Hope you get out a bit with your lovely baby whilst the good weather lasts.
mr grumpy
Hello Bean, so sorry that you’re feeling so down, I recognise that feeling, a week or so ago I ‘crashed’ for the first time since I was dx last year. Mine was due to a PIP issue. Posting on here really helped, I got lots of advice and encouragement.
In your case I would start hounding the MS nurses and support service - at my hospital when you ring them you inevitably have to leave a message and they get back to you, so start there, leave messages every day if necessary. When you eventually speak to them tell them how you’re feeling abandoned, hopefully you’ll get an appointment even if it’s months from now.
Of course they’re very busy but you are just an important as their other patients and deserve their attention. Also the neuro consultant will have a secretary, call him/her too. Even PALS at the hospital - they helped me get my first referral last year - I had been out of hospital for seven months after my dx before I was seen by the MS team.
With regards to your husband - mine is the same, occasionally will ask why the meds aren’t working and why don’t I go to the doctors (!). He does know what MS is about, he just refuses to acknowledge it I think. Not helpful though is it?
Fatigue is unimaginable to those who haven’t experienced it - you’re doing really well, I can’t imagine coping with MS, medications, a baby and moving house. No advice there except rest when you can (during baby’s nap time.) The housework can wait.
I hope you’re feeling a little better very soon,
AngC
Hello! I know how tired you must be with the baby, mine is now 2 and having MS on top of being a new mum is hard work!! Just a thought, how long have you been on the tecfidera? Could it possibly be the reason that your not feeling well? I am on copaxone but I have read a lot of posts from people on Tec who just felt lousy. Just thought that could maybe be a contributing factor so might be worth trying to get that appointment with the nurse or Neuro to discuss. In the meantime, sleep when baby sleeps, don’t worry about rushing out to that baby group, just relax in the house with your little one and take some time for yourself. Take care x
oh and ps, my husband is great, he cooks he cleans etc, but he doesn’t really acknowledge my MS. I think he’s in denial too. We don’t really discuss it unless I am having a relapse or symptoms. I would say it’s a man thing but all the other male members of this forum might not appreciate that! However, it CAN be a man thing. It’s maddening when you don’t feel heard, but maybe it’s just his way of coping.
hi bean
make sure you eat something fairly substantial before taking your tecfidera.
take an aspirin to ward off the flushing.
how long have you been taking it?
if it is early days, ask for more of the lower dose because we should introduce it as gradually as possible.
i’m just coming up to 12 months on it and i remember how sick i was when i first started the higher dose.
there is someone who comes on these boards who is very knowledgable about tecfidera, his name is paolo smythe.
carole x
Thank you everyone for your replies it is nice to know I am not alone. I don’t feel much better today but my mother in law rang me this morning as it is her day off and knew I had to go to the doctors to get bloods done. She offered to come with me and look after my little boy while I got them done. Then she took me for my lunch which lifted my mood for awhile (she is a great mother in law like a second mum to me). I am totally exhausted from my outings but glad I got out of the house with sum company. I have been on Tecfidera for 9 months and at the start I was very sick with it but then that seemed to have gone. But every so often I may have taken my first tablet with my breakfast at 7am and feel fine until about 6pm then take the flushing from nowhere and feel soo sick. Which then puts me off my food and I dread taking my evening tablet. I am going to phone the neuro secretary tomorrow to see if they have forgot about me and see if I can get an appointment to dicuss the issues I am having. I think tomorrow may be a pj day as I am pooped! Thank you for your replies it means soo much x
Have you tried taking first dose later in the day, with some lunch, then second dose with evening meal? If I forget evening meal one, I take it with a snack before bedtime. If there’s any effects I get to sleep through them. So long as you keep a minimum gap of four hours between doses it doesn’t matter what time you take them. Drinking water helps me move the flushing a bit faster too. 
Not on your own Bean, do remember that some people who seem to have everything can be alone in a whole room of people. There is feeling along and being lonely, feeling alone I think is a very acceptable way to feel once a person has had a diagnosis. It is an isolating experience even when other people are caring and helping. No-one can be inside our head and understand this massive thing that has happened to us. Anyway on the bright side as I say to the postman every day as he says ‘Alright Pam’; and I reply saying ‘Must be if I’m still here and you are posting bills through my door’.
Could be worse - could be Brad or Angelina! Got everything - lost everything. Or as Ozzie Ozborne says, ‘Could be worse I could be Sting’.
Trick for not being lonely or feeling alone, don’t ever watch afternoon tv, Where the Heart Is, all those other weepy things, adverts for three legged dogs and starving children, when you die adverts blah blah blah it is terrible. Although I would make an exception for Lovejoy. I prefer to put some nice slash/horror films on to keep me awake.
I have found as time goes on and the lengthening list of appointments and interventions continues, it helps me not to over-think things on a daily basis, accept all the frustrating crappy days and fill up my good days. It is a long haul fully planned thing we are in, give yourself a reward for being on here and discussing things. If I am still here this time next year moaning and taking the whatsernames out of everything I come across, then I’m not doing too bad. Being poorly means that small things affect us in a big way
If I feel alone, I go to the pictures and enjoy a double Ben and Jerrys, a good film and watching all the other people come in and argue about where to sit!