Hi there! I’m a 21 year old girl from Ireland, and I was diagnosed with MS in December (2 days before Christmas)! Since then I’ve been working non-stop and I think I’ve just pushed it to the back of my mind and tried not to really think about it. I’m staying with my cousin in Italy for the summer and looking after her son, and it’s only now that it’s hitting me. I cry so much, and I’m usually a really positive person but it’s affecting me so bad. I’m taking Avonex once a week, but I can’t really tell if it’s working because I’ve been relapsing, I think due to the heat. For about a week I was been completely numb down my right side, and that’s gone now but for the past 2 or 3 days I’ve had trouble writing and speaking. I take ages trying to get a sentence out, and I pause for ages between words. I also tried to write my cousin a note explaining that I was going out to buy magazines, but the words kept getting jumbled up and in the end I had to leave a note on the iPad which took ages too (you won’t believe how long it’s taken me to type this)! I guess all I want to know is, will I always feel this overwhelmed by it? I’m sick of feeling sorry for myself when I should be enjoying the summer. I know I’m coming to terms with it, and this is probably a stupid thing to say, but how long will it take, and is there anything that will help or make it easier and less stressful? A lot of silly questions but I couldn’t put it any other way! Rachael
Hello and welcome Rachael, It is quite normal to feel the way you do. We grieve for what we have lost, get angry, cry, rant and rave. Unfortunately you are in a hot country and heat isn’t good for MS. Slowly you have to expect the unexpected, come to terms with whatever it is and adjust the way you do things. In time your symptoms will come and go but remember we are all here for you. Take care Janet x
Just to add to what Janet said, I don’t think you will always feel overwhelmed by it. It may take time as you go through those stages of grief (denial, anger, depression etc), but eventually you can come to a place of acceptance.
Some things that might help are Cognitive Behavoural Therapy (your GP should be able to refer you for it). or mindfulness meditatio, which I find really helpful (there’s a ton of stuff on the internet about it, & you could try something like the getsomeheadspace.com website to make a start).
Hi Rachael, (I’m from Ireland too!) My God, you were just diagnosed last Christmas! I found it took me a long time (15 fecking years) to come to terms with my diagnosis. You have had a recent seismic impact into your life. It will take time to intergate it. (Hopefully not 15 years tho). The symptoms you detail may be MS, and being in Italy in June would be testing as it is so hot. But if you feel overwhelmed, as you’ve detailed in your post, it is also possible that some symptoms might be prompted by stress. I’ve found it’s taken me a long time to parse the symptoms of Stress from those from MS. I’ve found peace from The Power of Now by Eckart Tolle. When the terror of the future presses down on my I ask myself, “in THIS moment, are you ok?”. I hope you will be gentle on yourself.
Hi It’s still early days for you so give it time. But also what I will say is that Avonex can affect your mood. I wasn’t allowed to take it because I suffer with depression already so just be careful that it’s not affecting your mood. Lisa x
you wont suddenly wake up one morning and realise you’ve ‘come to terms’ with it.
I was diagnosed in January and have been through a similar thing. I was taking it all in my stride, busy having tests and starting avonex and then it just hit me it was real and forever. I was feeling depressed, scared about the future and my needle phobia went off the scale. I’ve had to force myself to stop worrying about the future and try and live in the present and enjoy the life I have now. I know easier said than done but I do feel calmer now. Stress and tiredness makes the MS worse so when everything starts buzzing/spinning I try and step back, slow down and it gradually calms down again. What I’m trying to say is you can come out the other side. It took me about a month to pull myself out of the pits with help from my gp, my MS nurse, friends, husband and MS forums.
Hi I’m 33 and was dx in dec also. I’ve been relapsing since the start of March quite badly and in past week started to get hand tremors and spasms in my right leg. I will just be happier when the day comes that it’s not the last thing I think about at night and the first thing in the morning. For the most post I try not to let it into my head as I really do appreciate how unpredictable it is now (had quite a range if symptoms during the relapse :)). My own way of approaching it is I have little control and so what I can, I will control I’m finding typing hard so apologies for any typos L x
Okay it’s good to know I’m not going crazy! I think I am stressing out over it and it’s definitely making it worse, I just have so many questions and worries but I suppose I have the rest of my life to figure them out!
Rachael, Remember we are all here for you, if you need help in any way. Take care. Janet x