A year ago today I felt well and looked forward to the future. Its hit me more than I thought and feel really down. Ive made a good recovery as in things function but I never feel well really and am always experiencing something whether pain, fatigue. I generally just get on with things and am thankful for the things I can do even if its just taking the kids to school and cooking tea all the things people take for granted but today I feel very sad. Ive started copaxone, stopped working took up new hobbies and am trying to look after myself (not easy with 3 children) and I know this is all positive just cant seem to shake the blues today. What people dont realise is just because we have ms it doesnt exclude us from having other stresses in life and I seem to get my fair share and today I just feel why me. My life reads like a disaster novel and we always find ways around things but with this ms im finding hard to see a way forward as I feel I cant be happy again having this hanging over me which is unfortunately my personality. Sorry for the moan sure ill be alright tomorrow, ive just found the date of my ms anniversary very hard. Thanks zoe
It’s understandable Zoe. It’s a big change in your life. I was feeling very limited the other day, for me anyway, then I caught an episode of Children’s Hospital. Bawled my eyes out at some of the cases,and felt better the next morning. Have a good cry x
Zoe, Zoe, Zoe! Please keep strong. You’re doing so well.
Can’t believe it’s the same person who was giving me advice and support, a while back when I was first diagnosed. (It is you, isn’t it?). Just like you, I am now pretty much back to normal. It could so easily feel like the last 3-4 mths were spent in a dreadful nightmare storm; my life tossed about and battered like a ship on the rocks. I’ve woken from that nightmare storm now and the seas are tranquil and calm again.- just like the storm had never happened.
But, although I feel much better now, MS is constantly with me. A tap on the shoulder constantly reminding me, " I’m still here and I’m not going anywhere. I will be with you always".
As you know, I’m a runner and I’ve been really, really pleased at the progress I have made since resuming my training. That said, last Tuesday, a club friend asked me to pace her to complete a 1 mile time trial on the local running track. My training was going really well and I felt confident that we could both achieve our targets. I steamed around the track and left her about 200m behind. I felt fantastic. It was just like the old days and my club mates could not believe how well I was doing. I rested for 2 mins and was just about to set off again. I had literally just set off again from the start line and WHAM!- My left side went into spasm again. The old familiar pain had returned and for 30secs, the spasticity grabbed my left side and I was literally frozen again- temporarily disabled. I sat down for a while and watched from the side. I then tried to set off for a second time. It happened again. I accepted defeat and headed home- on my bike. But, even my bike didn’t want to play with me, because I fell off onto a grass verge. I limped home feeling the wrath of that storm again. Once inside, I burst into tears and cried and cried and cried! Thankfully, I had my husband on hand to pick up the pieces once again.
That was then and I’m picking myself up from off the floor yet again. Yes, I am much, much better than I was 3-4 mths ago, but it takes time to fully adapt and modify. I realise that now. I’m not going to try to fight it again; just learn to live with it in my life.
Keep positive, Zoe and remember you’re not alone.
Sending you lots of positive energy. Tracyann xxxxx
I know exactly how you feel Zoe. I still feel the same on the 25th February each year as I was d/x in 2005 and I always feel low on that date every year.
I am not going to say snap out of it cause it is really hard to come to terms with but I promise you that you will. Remember, it is completely normal to feel this way. It will get better when you realise that you still have a life with MS. I have a wonderful life 8 years in so don’t worry you will be ok!!!
Take care of yourself.
Tracyann you hit the nail on the head there! I was diagnosed last September and have been gradually getting back to normal. But, it’s so right what you say, every now and then it’s like it jumps up to remind me that it’s still there and is never going to completely go away. I used to run long distance. It’s a struggle now but I’ve gradually returned to running short distances, very slowly. Just when I think I’m nearly there I’m floored by fatigue and back to square one. Stick with it though - I’m sure my recovery times are improving and there’s no doubt that keeping fit helps but it’s hard to get the balance right sometimes. I’m just thankful when I can stay upright! Zoe - it’s hard enough being a mum to 3 kids but then factor in ms and the normal “obstacles” life seems to throw our way - there will be ups and downs. There’s nothing wrong with having a moan, you need to get it off your chest. I can go for weeks being fine then I’ll watch something on tv (like MrsChicca) and spend the night sobbing my heart out. Better out than in I say! Hope you feel brighter soon - look after yourself.
All of you, I understand … There are no more words to describe the empathy I feel… I too am a runner/was a runner. Can’t run anymore. I was also a dancer- a really good dancer- cant dance anymore. I hope to get back to all of that- when things improve. I am still a wife, a mother, a full time worker, a friend, a sister … I just want to be the old me. Or maybe a modified version. Having a rough time right now. Everyone on here has helped me. We will get through TOGETHER. Love Lilly xxx
“Modified” - that’s a good description. Sorry you’re having a rough time, hope things settle for you very soon x
Thank you so much everyone, I woke up this morning to all your lovely replies and feel so much better. I am normally quite positive but I think the date coupled with problems with my son and mum just got on top of me and sometimes its hard to be the strong one all the time as we all know. Friends and husband are supportive but people really dont understand unless they are in a similar situation and this forum has been my lifeline for the last year so thank you all. (Think I went a bit mad yesturday not a good idea to colour hair when not in a good place, went mad and picked a red colour but today look like a witch with black curly hair…) so a bit of advice if your feeling down come on here dont take it out on your hair xxxx
Good advice! Lucky you did not decide on a low-mood tattoo…
I am glad that you are feeling brigher today.
p.s. I am sure that your hair is gorgeous, really. Probably just takes a bit of getting used to.
things get better with time. its a week away from my 5th ms anniversary.
it no longer makes me cry.
and i’m having my hair dyed a vivid red tomorrow!!
Me and a friend are thinking of doing somethinga bit mad tomorrow, tatoo, piercing watch this space xx
Go for henna. At least it will wear off if you change your mind!!!
I really do understand, there are some dates that you never forget.
All you can do is keep busy and try to stay positive and count your blessings. Having said that …
For me, it’s not the date of dx that gets to me, it’s the date of first symptoms as they came out of the blue and happened at Christmas time when I had just started dating a lovely man. We’re still very good friends but he has health problems too and it’s easier to be friends. We’ve seen each other through so many ups and downs in the past 5 years.
I had had one date with him and then couldn’t even talk properly and I didn’t know how to explain it as I didn’t know what was wrong and how do you explain to someone you are just getting to know that you are waiting for an urgent brain scan? I was in hospital until Christmas Eve and couldn’t even have visitors due to the winter vomiting bug. I missed the work Christmas party and the usual fun run up to Christmas which I love. I had to leave my 15 year old son at home with my dear old mum who had chronic heart disease (she moved into my house for 6 nights). They were both trying so hard to be brave and they even put up the Christmas trimmings as a surprise for me when I came home.
I was told the night before Christmas Eve that it was MS by a ward doctor (stupid man!) and then by a neuro the next day that it was one episode and would only be MS if I had another incident. The damage was done though, once someone has mentioned MS you can’t get it out of your head.
So for me, Christmas is always tinged with a bit of sadness because that was the start of my MS story …
Go for it Zoe! I spent months/ years procrastinating about getting a tatoo. I had always wanted one. At the end of May,ironically, at least a month before I fell ill and got diagnosed, I decided that the time for putting things off was gone and I spent 6 hours with the Tattoo Artist having my ‘Warrior’ designed onto my upper back. It’s quite large and was quite painful and I don’t normally wince (after all, I’m a Warrior!). But I love it! It says everything about me.
Now that I have MS, I just have to look in the mirror and it just reminds me that the battle continues and I will not go down without a fight. Keep smiling. Tracyann xx
HB- thanks for the comments and remember, your times will improve; mine have! I can’t bear the thought that my running life is over. MS has affected my muscles and balance the most, but unless you actually know me, you wouldn’t know that I have a neuro-degenerative condition, so I’ve been told countless times.
We all have to keep moving, however and whenever we can.
Adapt and Modify. That’s my mantra! Best wishes from Tracyannxx
Thanks Tracyann! I’m the same, look like I always have, occasionally my left eye has a mind of its own but apart from that no obvious signs! Ironically, when I did a 10k a few weeks ago I spent most of the race trying to catch up with a runner wearing an orange MS society vest! Maybe next time, I should wear it! Use it or Lose it! That’s my motto!x
Thank u everyone ill let u know if I actually have anything done, I think a ms mis life crisis is happening.today is the day of my first symptom i went into hospital thinking id had a stroke so day of first symptoms as well Tracey. I want to make christmas as goodnas possible this year as last year I was housebound and not well at all , so I better start shopping!!! Xx
Zoe - I do still love Christmas and I’m okay as long as I’m busy but if I’m left on my own then my thoughts drift back to that one back in 2008.
Have a really special Christmas this year. I’m planning to home bake lots of goodies for friends and family (and maybe keep some back for myself especially the cranberry vodka). I just need to keep fit and healthy enough to do it all.
Zoe, I may be joining you…I’m thinking of having a small orange ribbon on my hip with “dare me” underneath !! Xx
You are all such strong inspiring people, bp but what is reassuring that I’m not alone in thinking this, my anniversary is 11/11… And the closer I’m getting the harder it is and according to my DH I’m being a grouchy cow, I’m blaming the steroids for that though for relapse 3!!! Thanks, you have cheered me up and hopefully helped a lot of people not feel as down… Good luck with the tattoo…if you every get one Xx