Had my first Rebif delivery this afternoon, along with all the cr@p that goes with it! Cool bags, rebismart, shoulder bag, even a screwdriver!! Injection training is booked for 2nd July then I start in mid August as I don’t want to risk side effects for our long-awaited summer holiday. On top of all this, I’ve so far done two out of five weeks of the “Getting to Grips with MS” course run by the MS Society for our hospital. It’s been lovely to meet people in the same situation as me in person (although I’m a bit further along having been diagnosed last April and just missing out on last years course). It’s making it all hit home now though…I’ve been in my own little bubble for the last 14 months! Just sharing really…not really sure of the point of this post!! X
Hahaha - I know - the screwdriver did make me chuckle (for a millisecond I have to admit but still raised a smile)!!!
I felt exactly the same when I got my delivery - for me it was a reality slap in the face as I still had that small hope that the neuro had made a mistake when I received the diagnosis (even though I knew he hadn’t).
I was diagnosed in June 2012 with a confirmed diagnosis by a MS specialist in December 2012 following numerous MRI’s, VEP test, blood tests and the hideous lumbar puncture!!! I went into “organisation mode” where I told everyone what was wrong with me but thinking back I felt like I was talking about a 3rd person and not actually me! I still do it today but I think it’s my coping mechanism.
I don’t think I’ve come to terms with the whole diagnosis yet, even though I’ve been on Rebif (using the wonderful Rebismart) since mid April this year but I’ve decided I’m not going to let it rule my life. It is what it is, I live in hope of a cure but in the meantime I’ll live for the day!! That’s not to say I don’t have down days - oh my god do I and I feel so depressed but I just keep thinking “ride with it - I’ll feel different tomorrow”.
Stay strong and don’t worry if you find yourself feeling down - it’s part and parcel of the whole thing and it makes us more determined to fight on.
Hi Emma, I was in a bubble, as you say for 17 years!! Never spoke to anyone, never saw the MS nurse, told my nuero everything was fine. Well what a silly idiot I was, Untill I joined this site, everyone has been there, one way or another, sometimes the reality is like a slap in the face, all I can say is, no matter how trivial, or big your feelings, issues are, someone on here would have been through it, and can offer support. It’s amazing to chat to people who dont judge, and really, really know how you feel.
I was on Rebiff for 15 years, only came off in March, have some literature to read about a few new drugs to try, that’s not to say Rebiff didn’t work. It did. But my Liver decided it didn’t like it anymore hahaha
As someone told me YOU HAVE MS, IT DOESN’T HAVE YOU!!
Take care hun, Love Michelle xx
Hi Emma. I started rebif three weeks ago this coming Monday and it is a massive reality check when you receive the parcel. I was diagnosed in 2004 but up until the last few months have been well…so I do know how you feel. I didn’t live in a bubble as such and was very aware of my m.s which was mainly sensory for many years, most people knew I had it as I was always very open about it however as its started affecting my mobility, may only be slightly to some people but effects it nonetheless, I feel like I’m going through being diagnosed again. I wish my hospital ran a similar course as I would love to meet others with m.s especially around my age (32) with young children (I have a nearly 4year old). Have great friends and family but no matter what they will never get it the same if you know what I mean? Please don’t worry about the rebif. I’m a needle phobic but feel proud I’ve been doing so well. My husband was going to do my jabs for me but I decided I need this to be part of my life and that means doing it myself. Hate in a way doing it but then in another way I feel like its my way of saying take that you b****r. And almost see it as my defence. I’m on injection number 8 and honestly didn’t think I’d be so laid back about it so soon. So far fingers crossed side effects have been very minimal … None on dose 8, headache and sickly feeling on dose 22 however that had gone by the following lunchtime and was not a big deal. A few site marks but that is it and I’d rather that than the other side effects. Oh a little teary at times but think that’s the reality of the whole things. Say strong hun xxxx
Thanks Pen, Michelle and Lisa…I knew you’d all know what I was on about!!! Funnily enough, the injecting doesn’t worry me at all and I’d happily do manual injections if I didn’t have the rebismart. I guess that’s thanks to having gone through IVF three times a few years back then two pregnancies requiring daily blood thinner injections. I feel like I’m a self-injecting expert! The MS course has been really good. First week was introductions and worries/questions, last week was medical (run by my consultant), then we have benefits, Physio and a “social” (fish and chip supper!) week! I was amazed at the age range - youngest was just 16 years old sadly. Lisa - it’s such a shame you’re not near me! I’m 33 with a 5 & 3 year old, so I’m thinking we have most of the same worries and concerns. I’ve even worked out that my best days to inject will be Monday/Wednesday/Friday as little’un is at nursery Tuesday & Thursday morning and hubby is home at the weekend. If I’m unlucky and do get side effects this will be about the best solution possible. Thanks again all xxx
It is a shame hun… Really wish they did courses like that round here but as far as I know they don’t. Sounds like we would be similar. My days are sun, tues and thurs. I’ve done this so my Fridays and Saturdays are free as my lil one is at pre school everyday now. I work but work takes my mind of things. My son starts school this September which I’m finding very scary as he actually only turns four in July my little baby. We’ve decided we aren’t having anymore so I spoil him rotten well within limits. You definitely would not have a problem with the needles. My friend has just gone through IVF for the second time and is pregnant with twins. So pleased for her. Keep is posted on how you get in wont you and have a fab holiday. Where you going? Xxx
Hi Emma, I received a call today from the Bupa delivery service and have arranged for my Rebif package to come next week. It has left me pondering all that’s going to entail all day! my emotions have been swinging from positive and pro-active to fearful and wanting to run away and I haven’t even got it yet! Like has been said it is the reality of it all that’s hard to deal with, up until now it’s been an imaginary thing that was going to happen eons in the future! I am 28 and have a 2&4 year old so am really anxious about side effects So anyway the point of my rambling is to re-assure you that your not alone and I wish you all the best for the future, please let me know how you get on? Laura x
Laura…you will be fine hun. Try not to worry. I felt exactly like you on the run up and even kept trying to talk myself out of it but then my hubbie would give me some stern words and some people on here provided reassurance too. Keep us posted. There seems to be a fair few of us who have started rebif recently on this site, so its good to compare our journey and offer support in this beginning stage. As you probably already know and see there are lots of good advice and support on here from others on rebif. Good luck hun and feel free to message if you have any concerns or need advice xxxx
Lisa - it’s such a big step when little one starts school isn’t it? My eldest is in Reception so I’ve just been through it all. It was an emotional first day for me but he was fine. You’ll suddenly see your little baby grow up! My little’un doesn’t start until next year (December baby) and I’m already wondering what I’ll do with myself. I didn’t go back to work after having them both, so that may be the time to find something. I used to commute into London, so I’ll probably look for something easier to avoid the stress! We’re off to Ibiza (family resort, no clubbing!) for 10 days and I can’t wait! We booked it last June when we got back from our last holiday, so it’s been a long wait! Laura - side effects are my biggest worry. I’m hoping to sleep off the worst then any leftovers will fall on days when I have help or when the children are at school and nursery, so I have the morning to hopefully recover. I’m going to stock up on iboprofen and paracetamol just in case! Good luck when you start and enjoy the exciting DVD that comes in your welcome pack (I’m half way through - couldn’t sit and watch any longer!!!) X
Just typed a long response and it’s been sent to the mods! Hope it comes through as I don’t fancy typing it all again!! X
Awww, this is great, it’s like a support group. I really wish I had found this site when I was going through the same thing but I had my head in the sand.
I remember my Rebif pack arriving at work and one of my colleagues said ‘Oh is that our delivery?’. She knew full well it was my Rebif pack so I snapped at her and said ‘Here you have it and you do the sodding injections!’ I felt really bad afterwards but people with MS just don’t understand what a huge deal it is and what a reality check it is. That’s the bit that makes it all real. My diagnosis had come out of the blue and suddenly I had had to choose what I would like to inject myself with. Er, I’d like this to not be happening at all …
Anyway, 4 years on I’m older and wiser and if I can help in any way just ask. Although I think I have picked up some useful tips from some of you already so I’m not too old to learn either.
Lisa - it’s such a big step when little one starts school isn’t it? My eldest is in Reception so I’ve just been through it all. It was an emotional first day for me but he was fine. You’ll suddenly see your little baby grow up! My little’un doesn’t start until next year (December baby) and I’m already wondering what I’ll do with myself. I didn’t go back to work after having them both, so that may be the time to find something. I used to commute into London, so I’ll probably look for something easier to avoid the stress! We’re off to Ibiza (family resort, no clubbing!) for 10 days and I can’t wait! We booked it last June when we got back from our last holiday, so it’s been a long wait! Laura - side effects are my biggest worry. I’m hoping to sleep off the worst then any leftovers will fall on days when I have help or when the children are at school and nursery, so I have the morning to hopefully recover. I’m going to stock up on iboprofen and paracetamol just in case! Good luck when you start and enjoy the exciting DVD that comes in your welcome pack (I’m half way through - couldn’t sit and watch any longer!!!) Tracey - it’s lovely to talk with people who know what is like. My dx came quickly, but if already decided I had MS as I’d seen my nan go through it. Still doesn’t help when the reality of injections kicks in though! X
PS I’ve been trying to post all morning and it keeps being sent to the mods, so there’s a chance that there will be a whole run of my messages at some point! X
Apologies, Emma, you should be fine and dandy to post now.
I remember stocking up on paracetomol and ibuprofen. I was waiting for Tesco to send me leaflets about suicide as I had been buying 2 packets every time I went in store for weeks before my first injection! My son said they had probably put me on some kind of ‘watch’ list in store ha ha ha.
I wish I had had some inkling of what was wrong with me. My first symptoms were slurred speech and inability to write properly. My family were convinced I had had a stroke but as my blood pressure had always been absolutely fine I was sure it wasn’t that and had convinced myself I had a tumour. I was so scared and didn’t dare sleep in case I didn’t wake up. Even worse I didn’t tell parents I was waiting for a brain scan as they were both so poorly and I didn’t want to cause them any stress so I kept the handwriting thing secret and told them I had a mouthful of ulcers which were making my speech strange. Then when I was admitted to hospital I had to come clean at which point mum said she knew I had been lying (mum’s always know!). The hospital was closed to visitors as they had the winter vomiting bug so for 6 days I was isolated from son (15 yo at the time) and friends, family. I had just started dating a lovely man - had one date and then couldn’t talk properly on the second date, I think fate was trying to tell me something! He has health problems too so now we are very good friends instead. Eventually had MRI and lumbar puncture and ward doctor told me I had MS and seemed surprised when I burst into tears. He didn’t even explain what it was and all I knew was that it puts people in wheelchairs. The next day the neuro explained a bit more and told me it was CIS unless anything else happened.
Well it did. Just three months later, I was back in hospital as I was numb from the waist down and could barely walk. My hands were affected again. At least that time I was prepared for the dx. There is no history of MS in my family although my estranged father has been dx’d with mild Parkinson’s in recent years. (The man I call dad is really stepfather but he has been my dad since I was 5 - anyone can be a father but it takes a real man to be a dad :-))
Emma … Can I ask are you going on holiday in school holidays and if so was it expensive? From sept we are not allowed holidays in term time unless exceptional circumstances. So finding that it could be quite costly and therefore thinking we may only get one holiday a year really, well one pre booked one at least. So considering going abroad to guarantee some weather at least. My son goes to the pre school attached to the school so already knows his reception teacher so I know it will be me crying on that first day if school. People keep telling me but its no different as he already goes but in my mind it definitely is,it means he is growing up he’s my little boy forever though. Yeah when yours are both at school maybe you’ll have more choice in what you do and can choose something you really enjoy. Get a bit of you time back too. Love my boy but I do like work too… That’s for me and is my respite from being a mummy. I’m part time so best of both worlds. Anyway good luck hun, I best go and pack for our Norfolk holiday on Saturday. Charlie is so excited… It’s all about the discos for him. He’s a lil party animal
Lisa - have a good time. The weather looks as if it may get better as the week goes on so I’ll keep everything crossed for you. Charlie sounds so outgoing already - I’m sure he’s more than ready for school
Thanks Tracey. He is but I’m not ready for him to go to school…haha. Keep those fingers crossed. Looking fwd to it xxxx
Hi again! Thanks Stewart! Tracey - that sounds like a nightmare! My relapses have been fairly mild to date, but I did end up in A&E once when I thought I’d had a stroke. I was slurring and not able to find my words, and at that point I’d seen a neuro and been told it was highly unlikely to be MS! I then had an MRI that day and a dx came four days later. Looking back, I’d had several relapses that I think had been misdiagnosed (dodgy eyesight, carpal tunnel syndrome, etc.) Lisa - yep, school holidays are expensive! Last year we went to Menorca in June (before he started school) and it cost £1300 for a week for the four of us. This year, second week of holidays, we’re going to Ibiza for 10 days and I think it was around £2300! So a fair bit more, but we are getting three extra days as well. We found that booking early was essential as you normally get a free child’s place, but the offer runs out quickly. Also gives you a chance to pay it off in stages! We also did Center Parcs in the Easter hols and that was horrific - it literally doubled in price from the previous week! Enjoy your break - where abouts are you going? I’m originally from Norfolk so we’re up there quite a lot! X
Emma - it was a nightmare. It still brings tears to my eyes to think about it now. My dad and son rushed to A&E to see me that day and I had just been moved to the MAU. They just rushed my son out of the door so we had a quick hug and I still had no idea what was wrong with me. It was a week before Christmas … They discharged me at 1pm on Christmas Eve and by then she shops were bare so we had to had Christmas at parents and I had the headache from hell after the lumbar puncture.
I do have some good memories of that Christmas though. When I got home my son had found all the presents out as we had done the shopping for family together. He had wrapped them and distributed them with dad’s help and he had trimmed the tree and house as a surprise for me! What a sweetie. He was trying so hard to be the man of the house.
Oh - I work in a school and the whole school holiday thing is going to be awful from now on. Thanks Mr Gove! What he doesn’t realise is that we will get the flack for that. We have taken the stance anyway that we would only authorise 5 days per year and not in exam years (ie not during GCSE years and not during internal exams) but now parents have to make a very good case. My advice - tell the school that your employer dictates when you can take your holiday or that someone in the family has some dire illness that restricts the holiday or that the holiday is educational. Make sure you put lots of detail on the holiday form to justify the time off.