Posts

One Month Later

I've not really felt like keeping this blog up because of the fear of being depressing. I don't want to sound depressing but it's the only way I can explain what's been going on. It's been a little over a month since receiving the first lot of treatment and I'm still waiting to see the positives as I feel worse now than I did prior. Fatigue is the biggest issue for me which I didn't fully experience prior to the treatment. I used to think that fatigue just meant that you were really tired, oh how I was wrong. Fatigue for me is like my whole body, especially my legs just don't want to work. I struggle to get up, let alone walk. When I'm up to going out I tend to use Olivia's pram as a walking aid which helps and doesn't mean I need to use a zimmer, imagine that! I will forget what I'm talking about half way through a sentence or forget the simplest of words 🤷 I sleep A LOT and will wake up after a full nights sleep feeling as though I

Day 5/6

Last day of treatment! You know the drill by now.. Saline, steroid, lemtrada and saline again. All observations went well again and they were happy to let me go, until next year! Nothing exciting happened on day 5 I'm afraid to say, no Bob or other visitors so managed to squeeze in a a decent nap! 💤 So what's next? I kept being told that I'm going to start feeling horrendous and I've brushed it off because I've not been too bad but it has hit me hard now. I desperately need to sleep and have attempted to do so for around 18 hours out of the last 24 but have fever type symptoms, hot and cold flushes, nausea etc.. I don't feel as though I can stand for any longer than a couple of mins before I crash 😖 I had a bit of a melt down this morning because it's horrible feeling like this - not feeling like I can stand to brush my teeth let alone look after Olivia got me really down. I've got to remember why I'm going through this though.. Okay, I'

Day 4

I'm a little late posting about day 4 because we're now on day 5 (Woo-hoo!!) Usual morning routine now- take my pre meds, which I've done a little bit of research about now instead of just taking them.. Omeprazole - to reduce stomach acid and to prevent stomach ulcers. Due to the amount of medication I'm on I am prone to these symptoms which is also why eating little and often to keep my stomach lined stopped me feeling sick the other day *ping, she's got it*. Aciclovir- this is to treat symptoms of the herpes virus however I do just want to point out that I don't have herpes, before anyone mentions it, but in my case it's used as a preventative as it could be quite dangerous if I were to pick up chicken pox, for example. Co-trimoxazole- this is to treat any bacterial infections, in particular, listeria in my case. Unfortunately there has been a sad case of a lady in Bristol who passed away from contracting listeria meningitis which is why they now pr

Hump day!

So.. Day 3! Last night I started to feel the effects of all this medication and I was completely wiped out. Even walking up the stairs I felt tight chested and out of breath. I managed half of the bedtime routine *sigh* I gave Olivia a bottle and a cuddle before bed but couldn't manage to take her upstairs to put her in her cot 🙁  I woke up quite a lot during the night, felt quite restless and had indigestion. All of these things are normal. This morning I felt alright though, I managed the normal morning routine and even squeezed in some play time with little one before heading off to the hospital. I arrived a little later than usual as I stopped off to grab a coffee before heading up to the ward. By the time I got to the ward I was completely shattered again, could barely keep my eyes open and, to put it simply, like I was in a daze. We got started a little later today and it made me think of Bob because he told me yesterday that he's not allowed to leave the

Day 2

After my day one post I had an alright night. The only blip I had was when Kyle and I left the hospital I attempted to walk back to the car park with him but I was extremely tight chested so had to sit and wait in reception while hubby went and got the car.. That was a bit pants because it was only a short distance which I wouldn't normally think 2ce about but just couldn't manage it.. The tight chest soon passed as soon as I was resting again. I slept really well considering the nurses telling me yesterday that the steroid part of the infusion would make me restless but I didn't have any problems with that at all. Olivia had a really good night too which helped mummy and daddy massively 👶 I was given a load of meds to take home yesterday which are Omeprazole which is just one a day for 12 days, Aciclovir which is 2 a day for 33 days and co-trimoxazole which is 2 a day 3 times a week. This is along with the antihistamine and paracetamol so I'm rattling when I walk a

Rewind

Apart from talking about my treatment and what I'm going to be going through for the next few weeks I thought I'd take a little rewind as to how I got here and what's happened from the questions I've had on the back of my post yesterday. Didn't expect so much interest! My first official episode of MS was when I had Bells Palsy back in 2014 I believe (I do have some photos of you ever fancy a laugh). The left hand side of my face was completely frozen. I went to my GP after having a complete melt down who put it down to a recent cold I'd had and it was an infection in my nervous system. I was given a high dose of steroids to take and after around 3 weeks my face went back to normal. Prior to this I did have and have since had random episodes of weakness in my limbs which was put down to trapped nerves, a swollen muscle in my elbow amongst other things. I don't blame anyone for how long it's taken to get to this stage as MS if very hard to diagno

Day One

I was diagnosed with MS 5 months ago at the grand age of 27. I'd just had a baby girl, Olivia, who is mine and my husband's absolute world. To begin with it felt as though someone had just ripped my good health away from me. How was I going to continue to look after my little bundle of joy? Was I going to be able to run around after her when she's a toddler? How will my husband cope should I end up wheelchair bound? I still don't have answers to any of those questions but you'll be glad to read that I'm coping with my prognosis alright, I think. Of course I have the odd wobble but I'm only human, right? Things now made sense. I understood why these odd and sometimes awful things would happen to me and have happened to me now for around 6 years, unbeknown to me. I talked at length to my support network (professionals, family and friends) about what is the best decision for me going forward in regards to treatment. All I knew is that I NEEDED to get