Many scars

** 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

  1. 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.
  2. 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.
  3. 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 😉
  4. 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?
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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!
  12. 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.

 

MS and Fatigue

“Lazy Days”, or just days as I call them, are all too frequent with MS and fatigue. Don’t get me wrong, I love a feet up, popcorn and boxset day as much as the next person, it’s just that when they become a regular necessity that they start to lose their sparkle! I also get that this sounds a bit “my diamond shoes are too tight” and I do genuinely feel for everyone struggling with their daily grind. It’s just that my daily grind is different now.

Days for me generally start in the wee small hours of the night when I need to use the loo… See what I did there? 🙂 I then struggle to go back to sleep so I’m usually exhausted when morning comes. I take a muscle relaxant every morning to try calm the spasms in my legs but these make me groggy so I stay in bed till that wears off a bit. If I have no appointments or classes to get to then I usually spend the next few hours trying to convince myself to get up and eat something. And so it goes for the rest of the day.

It’s really difficult to make yourself do things when you know it’s going to be a struggle and you’ve woken up exhausted. Showering, exercising, going out or even preparing a meal become monumental tasks that you know you HAVE to do but just cannot summon the energy or will power for.

MS fatigue is not just tiredness after a bad night’s sleep. A rest and a nap won’t fix it. It’s more like wading through a bog, which I have experienced so I know what I’m talking about here. It feels like you are trying to function in a haze and even blinking is a chore.

So why this topic this week? Well I took a photo of Ed (the cat) and he just looks so exhausted. It got me to thinking, maybe cats understand MS fatigue. They snooze during the day, lie down a lot and are wide awake in the middle of the night. I have also noticed that they are prone to short periods of exertion and giddiness and then are laid out exhausted once again. Doesn’t that sound familiar? As I said mornings are generally not good for me but about 7pm I get a short lived burst of energy which I usually squander on something like trying to tidy up or hoover or some other task that I will inevitably fail to finish and then I’ll be wiped out for the evening, dejected.

So what’s the plan from here? Well I’m planning to try out a few things to see if I can regain control of my life regardless of tiredness. Some I’ve done before with reasonable success others I’ve picked up along the way from sources like my OT, the living well with a chronic illness course and others with MS. So have a look, see what you think or let me know what has worked for you 🙂

* To do lists – who doesn’t love a list and the sense of achievement when you tick something off
* Prioritising tasks – this month I’m prioritising exercise and eating a little better (lol, I’m having a cookie but I did some yoga this morning so that makes it ok, right?)
* Setting achievable goals – no point saying I’ll run a mile every day when walking is a struggle. I followed 2 seated yoga videos on YouTube today – much better
* Reducing the time I spend playing games on my phone and absolutely none when I’ve gone to bed (really bad habit!)
* Establish good bedtime routine – this one is from my OT. My routine will include diffusing lavender oil at bedtime and winding down before trying to sleep.
* Mindfulness – trying to live in the moment, be kind to myself and not make myself feel bad when I can’t do something

So I think that might be a good starting point. I’ll let you know how I get on 🙂

Neurology Appointments

I have a neurology appointment every 6 months. It’s nice to check in with the team more regularly as previously I only saw my consultant once a year in the UK. I actually never met him at all as I only ever saw one of the team of doctors, who were regularly on rotation so I never saw the same one twice. The continuity I have with the team in St. James’ hospital is much better. I usually see one of the current doctors first who notes any changes and carries out an examination. They then report to my consultant and she comes in to run through the plan and talk me through things.

This post isn’t about complaining about consultants and neurology services, though I’m sure there are lots of people out there with valid grievances, I guess I’ve been lucky. Although I will add here that it is very difficult for the team to monitor neurology patients or make recommendations on medication without regular MRI scans to check disease progression. Current waiting times are crazy and that’s just to be notified that you have an appointment never mind the actual scan.

I had a neurology appointment in last week. My consultant was away so I saw her registrar, whom I hadn’t met before. He was really nice and very thorough and explained things well to me and my husband.

I suppose I’m just wondering what do I actually expect from neurology appointments? My MS is not dramatic, rather a slow creeping version that means things get a little more difficult every day until 6 months later I need more mobility aids than before! My scans have been stable for quite some time so what are the doctors supposed to do with me? From their point of view the drug is working to control inflammation as there is nothing new on the scan. I’m reporting progression but with no evidence on the scan there is no justification for a medication change at this point. All medications come with their side effects and complications so I’m not terribly eager to move to the next level anyway, but what was I hoping he’d say?

I didn’t hear anything that I didn’t already know. MS sucks and shit happens, it wasn’t put to me that way but we all know that’s the truth of the matter. The doctor was very sympathetic and kind but I’m already taking medication for most of my symptoms and he explained why further intervention or increased dosages might not be helpful and could actually cause problems so I’m happy with the decision to leave things as they are. However I still came home feeling a bit flat and sad. The hard reality is that I’m the expert in my MS and 12 years in I pretty much know all there is to know about what I should be doing. (Still open and hoping for more though)

SHOULD BE DOING! I’ve totally fallen off the wagon! I’ve done the radically healthy diet thing and was a fanatic about my home physio program. It’s just after 12 years I’ve lost my mojo and I’m struggling to find the motivation to go through all that again when there are no guarantees it will make any difference. As I said shit happens and I like cake 😉 

Look, I’ve done it all before and I’ll give it a go again to see what happens. I suppose there’s always the hope when you visit the neurologist that you’ll talk about your symptoms and they’ll just say “oh there’s a new tablet for that, it’s guaranteed to work with no side effects”. That says it all really, a possibly progressive, incurable disease coupled with unreasonable expectations (hopes or wishes really, I don’t expect anything to be resolved) can only lead to an unsatisfactory appointment.

It must really suck to be a neurologist and know that at some point you will run out of drugs or suggestions for some of your patients. I suppose this rant is about me being frustrated but recognising it must be frustrating for the care team too. So thanks guys, I do appreciate you 🙂