OK, so that makes the past few months sound more dramatic and exciting than they actually were but it has been a journey anyway. The tail end of last year was pretty tough for me with worsening symptoms and a MRI confirming a relapse. But here I am in the new year and where has that relapse left me… well after the initial jubilation that the MRI results actually agree with how I’m feeling and the buzz of hospital visits and steroids I’m feeling a bit flat. The remitting part of my MS is predictably slow to show itself so now it is a waiting game to see what symptoms dissipate and which are keepers.
Here’s what I am struggling with – how long should you spend accepting what has happened, recuperating and giving your body a chance to heal before you power through with exercise and rehab?
My case was further complicated by the fact I caught a nasty cold so have been mostly bedridden for two weeks, thanks for nothing flu jab 😉 I understand that the only way forward is with hard work and physio but when you are sluggish and fatigued how far should you push yourself and how soon? Motivation is also at an all time low. Turns out I don’t mind being forced to down tools and stay in bed
Another consequence of my relapse is that my hospital care team have taken me off my medication in order to move onto a stronger option called Mavenclad, aka Cladribine. In theory there is no wash out period necessary between these drugs but a possible side effect of the new drug is lymphopenia which is a lowering of the lymphocyte count in the blood, this affects the immune system and can leave you open to infection. As mine was already a little low we have had to wait for mine to get to normal levels. In essence this has led to me being off MS medication since my relapse and that is an odd place to be. I’m not sure how I feel about that. On one hand it means one less tablet a day therefore less toxins and drugs for my system to cope with but on the other hand I’m at the mercy of my MS giving it free reign with my immune system.
This isn’t the first time I’ve changed medication, the first couple of times I found it very stressful. I have had a strange kind of bond with the medications while I was taking them and was worried the next medication would have more severe side effects or wouldn’t work as well, change can be scary. Each time I trawled the internet for information and views of others on the same medication before making a decision, which I found difficult and stressful. There is never a definitive right or wrong answer.
This time around I am a bit more laid back, this will be my fifth DMT so I’ve been through all this before and I think I am less stressed about it. What will be will be. This medication is pretty new and I haven’t found a huge amount of information or articles about people’s experiences with it online so I do not have much information to go on. I think that is why I want to document my experience of it. I want to keep track of how it makes me feel and any side effects. I hope that my writing about it will be useful to someone in the future and maybe make their decision to change or not a little easier. Fingers crossed all my bugs clear up and my lymphocyte count settles so I can get started! I’ll keep you posted 🙂
So, long time no blog, I haven’t been too busy or been overdoing the socialising thing so have no real excuse. I have to be honest, much like Ed in the photo, I was a reluctant participant in the recent holiday festivities, in any activities really – hence no blog posts. So here I am brushing off the cobwebs and trying to get back into the swing of things much like everyone else at this time of year.
I think that the holidays are particularly difficult with MS. I had a lot to deal with at the end of 2018 – relapse, new lesions and new mobility restrictions to mention a few. I’m not looking for sympathy here that’s just how it was/is. Taking all that into account my mood and motivation were understandably quite low (still are to be honest). Preparations for Christmas and New Year just seemed frivolous, tiring and kind of pointless. A lot of effort for one day. Bah humbug and all that.
That’s where the internal struggle came in. I didn’t want to feel that way or bring my loved ones down. I wanted to give thoughtful gifts, be caring and considerate but it all felt like too much of a struggle. In spite of all this I think I did ok, I had a good time and don’t think I bummed anyone out. So how did I manage it in the end?
- Delegate, delegate, delegate – I passed off tasks to willing parties whenever possible, for example my husband put up and decorated the tree, I’m very proud of him!
- Shop online – crowded shops and malls are no place for a grumpy person struggling to get around with a rollator
- Shop earlier/later in the day – I actually started my shopping too late for the internet to save me as nothing would be delivered on time. I was therefore forced to enter the dreaded malls but kept to times when shops were just opening or closing so I mostly avoided the hustle and bustle.
- Stop stressing about presents – people who care about me know my struggles and understand I won’t be treading the streets looking for the perfect gift. Besides people rarely complain when given a gift, not to your face anyway, so why stress!
- Pre prepared food – my mum looked after the turkey and I ordered everything else premade from a supermarket. We only had to keep track of the timings of what went in the oven when and Christmas dinner was sorted. Very tasty too!
My final thoughts are on how I handle New Year. It is just a night like any other. If going out among the hordes to ring in the new year is your thing then more power to you. Personally I hate new year’s eve. Again too much effort for one night. I stayed home and watched a movie but that isn’t the problem. It’s all the talk of resolutions and plans for the next year that get me. MS makes planning a day ahead difficult never mind the coming year. If I’m not careful this time of year can bring a lot of negative thoughts about the restrictions and concessions I have because of MS. What could have been, what will never be and how bad can it get… Misery lies down this road so this year I have chosen to focus on what I am grateful for.
- Mostly I am grateful for the people in my life – family, friends and the hubbie. They make me smile and keep me going. I won’t name names, you know who you are – you guys rock!!
- My hospital care team. I know it is not the case for a lot of people but I really do like them and believe they have my back – keep up the good work guys
- Music and concerts – I’ve been to 2 concerts this year that were brilliant and reminded me how much I love some bands
- I love board games – a hobby that can be done while seated – awesome!
- I better say Ed (the cat) since I use him to illustrate my moods and blogs
I don’t believe in new years resolutions but I do plan to continue to put my efforts into focusing on the good things in my life.
** No cats were injured in the making of this blog 🙂
Ed’s scars are more visible than mine so illustration purposes only **
So that was a hell of a week. As I’ve said before I have been feeling a bit rubbish with MS over the past year or so. I have been noticing decline in mobility and worsening fatigue that make everyday life more difficult and altogether more exhausting. The most worrying thing for me has been that my scans have remained relatively stable showing no new lesions or clear signs of progression. Whilst I realise that that sounds like a good thing I can assure you it didn’t do much for my mood or sense of self. I’ve been feeling weaker, more reliant on others and less independent – in other words needy, which I am not ok with!
It really starts to play with your mind – wondering am I imagining these changes or being overly dramatic. I don’t do fuss or drama usually so calling up my care team to complain about changes just doesn’t sit well with me. I’d much rather get on with things and power through – I’m such a trooper (or idiot, whichever)
Anywho, I had some changes that for me were significant and really couldn’t be ignored anymore. I was having a lot more problems with balance, struggling to get in and out of bed or the bath. Everyday tasks were becoming impossible and quite frankly dangerous so I relented and called my MS nurse last week. I find it really hard to make that initial step of contact and raising the alarm, which is crazy as the team really encourage you to be open. I think that on some level I feel a need not to acknowledge the change or escalate it as that makes it all too real and means I may have to face some harsh realities. It is an individual call as to what constitutes too much for you to cope with and I obviously hit that point last week.
My nurse arranged for me to see the registrar the next day and he saw the change in my physicality immediately. Martina got me added me to a cancellation list for MRI which I had on Thursday. I got a call on Monday to say a new lesion showed on the scan and to get myself into hospital for steroid infusions everyday this week (last one today – yay!!)
I’m so impressed with how quickly everyone reacted and looked after me. I feel very grateful that they got all this sorted but I do feel the need to point out that this is extremely unusual and perhaps the planets aligned or karma is responsible for the fact that I got the MRI appointment so quickly. Maybe I was just due some luck. I don’t want to give anyone the impression that this is actually how uick the HSE works normally.
I’m sure it sounds weird that I’m thrilled to have a new lesion on my brain but honestly the relief that there is something there and that I’m not imagining things is such a vindication. I was worried that I was slipping into a more progressive state of MS where there are less treatment options and probably more disability on the horizon. With a clear relapse I can take the course of steroids and discuss with the team treatment options next week to see what the most appropriate course of action is. Long story short, there are options.
So what have I learnt this week
- Don’t be a hero – talk to your team about any changes. Suffering in silence is overrated and there may be something they can do to improve things.
- You know yourself and your MS best. Stick to your guns, if something doesn’t feel right keep reporting it. Scans don’t show everything.
- Steroids rock!! I’m not a fan of being stuck with needles everyday but the infusion process is not a big deal once the line is inserted. You sit for about 60 or 90 minutes then you’re done till the next day. Have to say I’m feeling some improvement already but then I am full of steroids so we’ll have to see how the come down affects me next week 😉
- During the infusion you may get a nasty metallic taste but I found drinking flavoured water or tea helped a lot. Is there anything tea can’t help with?
- High dose steroids can cause a spike in blood sugar levels and mimic a kind of temporary diabeties (or something) so my initial plan of sweets or jellies to combat the metallic taste and to boost my spirits had to be avoided – poo.
- You may end up with rosy red cheeks for the week and overall I was really quite warm, but when going through a relapse my appearance wasn’t my highest priority.
- Depending on the time of your infusion it can be difficult to sleep. Early morning infusions give you the best chance of catching some zzzs at night but you have to take the appointments when available so I recommend having books, audio books and relaxation tools on hand to keep you sane in those sleepless hours and to help avoid the spiral of worry that will inevitably come calling.
- Share what is happening to you with friends and family. You don’t have to go into detail but they care about you and want to help so let them.
- You may be chock full of steroids but you do need to be careful not to overdo things too quickly. Give your body a chance to put all that pep to good use.
- Steroids help to reduce the inflammation of the relapse more quickly so results will vary as to changes or improvements you will notice so try to have reasonable expectations – whatever they are.
- Relapses suck, I found I went into a coping mode of just getting through it all but it is important to acknowledge that this is a crappy time and it is ok to be upset, disappointed or miserable. No one is strong all the time, cry, swear or throw things – whatever you feel like!
- Finally I think I’ve learnt a lot about myself this week. I always viewed myself as a realist with some serious pessimistic tendencies, however I have found that I am actually a secret optimist – who knew! Everyday I’m looking for and noticing improvements which are probably not visible to anyone else.
Sorry for the long post but it has been an eye opener for me and if I can allay someone’s fears of relapses or steroids then that’s all worth it. Overall I am battered and bruised but quite pleased with my new addition to my collection of lesions, just not eager to add any more.