Tag: MS diary

Baby and Me ~ MS Diary

17 months ago I was diagnosed with Multiple Sclerosis

16 months ago I found out I was pregnant.

9 months ago my little boy was born.

What a whirlwind that all was!

I’ve not really written about what it has been like over those months of getting my head around having MS and then finding out that after 5 years of trying for a baby we were finally pregnant. There are many posts I should have written and maybe I will do still as I struggled to find others that were in my situation and writing about it. But the fact that it is MS Awareness Week this week has prompted me to write a post about how I’m managing my MS, new parenthood and the demands of my 9 month old.

Gosh even writing that feels weird, my baby is 9 months old (well nearly!) I have survived 9 months of him being in and 9 months of him being out alongside dealing with MS.

How’s it been? Good days and bad days, but isn’t that living with MS but also parenthood? Part of me is glad I got pregnant so close to diagnosis, I didn’t have time to dwell on it, I just had to get on with things. MS brings fatigue, New Baby brings extreme tiredness, where one starts and one ends is hard to tell sometimes but having my little boy to look after means that I have to dig deeper than I ever thought I could to make sure I’m there for him.

Day to day I still have a lot of residual symptoms from my major relapse post diagnosis. I find that I can only really focus on one thing, the baby comes first and I do find that I probably am doing a disservice to the rest of my life but currently I’m okay with that.

I’ve learned to adapt quite well, I have a particular way I can lift him up from the floor, a way to carry him down the stairs, a style of clothes that I know I can deal with without getting frustrated my fingers aren’t working well. Poppers on babygros are the Bain of my life but I can manage as long as I don’t try to do things in a hurry!

I organise everything for him the night before, write everything in my diary and have reminders set on my phone for important things on the days that brain fog sets in.

I am still breastfeeding him, something I never actually thought I would still be doing. It helps not to have to remember formula but is hard because I can’t just hand him to someone else.

Tiredness is probably the hardest part. If he doesn’t sleep or has an off day/night with no naps or lots of broken sleep then I really feel it, all my residual symptoms are exacerbated. Like today, he didn’t sleep so well last night for no real reason but today my left sided weakness has gone crazy! Today is a day where I know I have to be more careful, a day to not rush things, a day to get to bed early!

I don’t know what it’s like to have a baby and not have MS, what I do know though is it is totally possible to have a baby and have MS. We are prove of that.

Claire xx

MS Diary ~ MS Awareness Week and me

This week is MS awareness week. The hope being to raise more awareness of what Multiple Sclerosis actually is and how it affects people.

I have to be the first to admit that I never really paid much attention to it, I didn’t know anyone with it so why would I bother understanding what it was like for people to live with.

However if you are reading this then you do know someone with it! You now know someone that lives with this every day, slowly I am trying to find my way. I went quickly from diagnosis to pregnancy which brought with it lots of other things to think about. My MS has had to be put to the back burner quite a few times but it is always there. There is not much that others can do to help, apart from to understand that from the outside everything may look the same but from the inside things can be far from it at times.

Please take a moment this week to understand Multiple Sclerosis a little more, it will mean more to that person living with it than you will ever know.

Medication and Me – MS Diary

Medication and to take it or what to take has been a thing that was pushed to the back of my mind when I discovered I was pregnant. There was no licensed medication at that point that was safe for pregnancy so the decision was made to wait until I was later on in my pregnancy and relook at it then for planning for post birth.

My MS team were great and we discussed at length medications that I could start post birth but these were only if I was not breastfeeding. We decided that we would arrange a prescription that could be filled if I was to stop feeding and decide to start the medication.

Roll on 4 months post birth and I’m super proud to say I’m still breastfeeding but unfortunately I am also experiencing a relapse. I’m unfortunately not one of the lucky ones that get protection from exclusively breastfeeding though I do still feel that this one is milder than the significant one I had last year.

Due to feeding myself I can’t opt for steroids to try to manage the relapse so it’s been a case of just trying to adapt and get on with things. Having Oran has made me have to do it rather than dwell on how rubbish I’ve been feeling but it’s also meant that I’ve not put myself first either and I feel that that may be working against me and prolonging the relapse.

This week I had another appointment with my MS team and they discussed medication that earlier this year was licensed for pregnancy, they weren’t sure if it was the same for feeding but it turns out it is. So after much discussion and soul searching I have decided to start it. The reason for the soul searching was mainly due to the fact that this medication is only available in injection form and will mean I need to self inject three times a week.

We are going to use it as an interim medication, so that I’m on something now which will hopefully help me to not relapse again – unfortunately MS medication does not stop you from your current relapse nor does it help with any residual symptoms you’ve had from previous relapses but works to stop your lesions from being so active in the future.

Here’s hoping it helps and I get on well with it.

Claire xx

MS diaries

I have decided to do some new posts on my blog. I’ve been neglecting things on here for far too long but am hoping that I now have a little extra time to focus back on here again.

I’ve wanted to write a little about my MS and pregnancy, labour and delivery and life with my son for a while and thought it would be good to write some MS diaries, so look out for them coming to the blog soon.

Claire x