** 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.