MS – My Crazy MS Life

MS and the holidays

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.

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

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.

My crazy life getting crazier

So life just keeps getting weirder. I have recently had to accept that cleaning my home is beyond my capabilities so as I write this post I have a cleaner here for the first time. It is so strange to ask someone to clean my home when I’m here with no job and no big demands on my time.

Lots of people have cleaners, in fact the lady who is here is my friend’s cleaner so I know she is nice and does a good job. However when I opened the door to her I still felt the need to explain why I had asked her to come and to explain why I don’t just do it myself! My friend doesn’t feel the need to apologise for getting help cleaning so why do I?

I have been contemplating this as I hide out in my bedroom, feeling more and more guilty with every sound of cleaning. The conclusion I have come to is not that I am lazy (I am a bit) or happy to live in my own filth but rather that this is yet another compromise I have to make thanks to MS, another concession made for my illness.

In the grand scheme of things this is hardly a big sacrifice. It’s not like the time I had to use a walking stick, or the time I realised I was too unsteady with the stick and had to upgrade to a rollator. If I was well and able bodied I would probably still need a cleaner but I would be working and paying her myself in that scenario.

The guilt that plagues me while living with MS can feel crippling (maybe that’s the foot drop 😉 ) Sometimes I feel like a shadow of a person and less worthy as a result. It scares me to contemplate how many more concessions this disease will require of me. Each one is a painful little jab to your independence and sense of self.

Whilst all this is true and is how I’m feeling at the moment it is time to look at the big picture. My stick and rollator keep me moving so I am not housebound or isolated, my disabled parking badge is the envy of everyone I know and my grabbing stick is so cool I drop stuff just so I can use the stick to pick them up. All these things were difficult to accept at first but all have made my life easier in their own ways. It will be the same with this too eventually. Having a nice clean home without having to exhaust myself will be really nice and I won’t have to try tidying everytime someone comes to visit.

Right, I’m off to play with the cat – he has joined me in hiding 🙂

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 🙂

Life’s injustices

One of the biggest injustices in this world, in my opinion, is the fact that having a chronic incurable illness does not render you exempt from other illnesses. Ok, so it might not be the absolute biggest injustice, but just like Ed in the photo having to wear his collar so he can’t lick his latest war wound, it is pretty crap.

So what has brought on this line of thought now? Well I had a minor sniffle and cough last week. No I didn’t have the female version of “man flu” and wasn’t being over dramatic. The plain facts are that even a minor bug can trigger or exacerbate usual MS symptoms and make you feel pretty rubbish or even mimic a relapse. In my case last week my “cold” (it wasn’t even bad enough to warrant that word to be honest) meant that I was even more drained than usual, was struggling to sleep (thank you tickly cough) and as a result had less energy to do the things I need to do – like look after myself! 🙂

In MS the immune system behaves oddly and seems to attack itself and the body too much to have time to work on bugs and illnesses. My experience last week was just a tiny example of how extra ailments can play havoc with our lives. Factor in on top of all this the fact that most MS treatments dampen down the immune system and the misery of constant bugs seems inevitable.

But what happens when it’s not a minor bug? I had a vomiting bug, still only minor, but it caused such a big flare that I ended up on the bathroom floor unable to move and with no strength in my legs. These episodes are really scary and make you worry about the future and what could be.

Even still that is not as bad as it gets. I have known people with multiple chronic illnesses and this is where I think life is going too far. Some unfortunate combinations I have seen people coping with:
– Fibromyalgia and ME
– Diabetes and MS
– Cancer and MS

So I’m really not complaining about my 24 hour vomiting bug or my sniffle. That is small fry in the context of what could be. You just never know what someone else is going through so lets give each other some slack… are you listening life?? Enough already!

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 🙂

Accessible Concert Tickets

In the days before MS I was a fairly regular concert/theatre goer. I loved seeing bands play live and our occasional trips to London to see shows on the west end was another favourite treat. As my MS has progressed and my mobility has become more troublesome the idea of undertaking any of these excursions has become more and more frightening. From experience I know that concerts and shows can mean public transport and a lot of walking to get to the venue, steps to get to your seats and crowds of people. That’s not counting the trek to the loo and the queues when you get there, which to be honest is a big issue for people with MS. Each one of these concerns individually is enough to put me off but, all lumped together, had me thinking that my concert going days were over. So much so that when Guns ‘n’ Roses played here I didn’t even entertain the idea of going although I’m a big fan and knew other people who were going. (I don’t entirely regret not going – did you see the rain that day!!)

A friend of mine is a massive Paul Simon fan and her birthday was in June. Paul Simon is on his Homeward Bound tour this year and was due to play Dublin on July 13th – the perfect birthday present. So I finally bit the bullet and purchased my first wheelchair accessible seating.

I’m not a regular wheelchair user. I’m choosing to persevere with the whole walking thing but as I can’t walk very far or stand for too long I am quite restricted. I borrowed my mum’s mobility scooter and booked disabled parking at the venue (RDS). As the scooter doesn’t actually belong to me I felt like a fraud when thinking about accessible concert tickets, but I definitely couldn’t have gone without it.

So how did we get on on the day? My friend was amazing, she helped me get the scooter out of the car and assemble it. I needed it to get from the car park to the accessible area, it was quite a trek. To be honest we spotted a lady in a wheelchair and followed her as we didn’t know where to go and didn’t see any signs to point the way. As it happened she was at the concert alone so we all sat together for the evening. She recognised quickly that I have MS as she has a close friend with it too. She has gone to many concerts so was a wealth of advice and really reassuring. I’m glad I met her.

I was really concerned about being in the accessible area but there was a kind of comradery there. Everyone understood their own difficulties and had empathy for each other. Any guilt I felt was entirely self inflicted.

Paul Simon was absolutely amazing, he played all my favourites and the atmosphere in the arena was brilliant. We swayed, tapped our toes (well my left foot did its best but the right was having none of it) and sang along at the top of our voices. I thoroughly enjoyed the day. The concert organisers gave each of us a bag with a bottle of water, a poncho in case of rain and a blanket if it got cold in the evening. I thought this was a lovely touch and the blanket really came in useful. It was a great experience to share with my friend, so much so we’re off to see Def Leppard in December 😀I’ve also booked seats for a show in the Bord Gais theatre – there’s no stopping me now!

So as usual I have a few things I’ve learnt that may be helpful or may quash some of the concerns that stop you booking accessible seating. I might have done it sooner if I had realised its not as scary as I had imagined.

Bring snacks or buy your food early, queues for the food vans were huge
If you are buying water they will take your lid, however a lady there was allowed to keep her lid as they said it was medicinally necessary, worth a try?
Don’t rush out when the concert ends, there are so many people leaving that getting around is more difficult. Besides if you have parking like we did they let the pedestrians go before you can drive out. We were sitting in the car for ages, better to stay in the grounds.
I can only speak about the facilities at the RDS but they had a designated disabled toilet, fully accessible, and a loo for just the disabled area, so not far away and no queue – brilliant
Don’t be shortsighted like me, I was warm so went to the concert in light clothes with a light cardigan for later. I was shivering by evening hence the free blanket was awesome

I’m always open to any thoughts or suggestions that could make my life easier so if you have any tips for concerts that work for you then please feel free to share 😀

So there you have it. My concert going days are not over. Yet again MS has tried to spoil things, but although I resisted the solution, I found a way round the problem. I’d still rather walk but whatever. Take that MS! 😠

MS and Travelling

Life with MS takes more time and consideration than life before MS and that includes travelling. Everything from planning bathroom stops on longer car journeys to accessibility in hotels. I have done my share of travelling especially with regular trips home when I lived in the UK. Ironically my two biggest trips came post diagnosis and were both to Hawaii with my 4 sisters. The trips were almost 10 years apart and each had their own MS related stresses.

The first trip involved travelling with Copaxone injections. I was so worried about going through security, especially in the US, and facing the question “Do you have any sharps or liquids?” – I had BOTH!! I had myself feeling like a criminal waiting to be quizzed, frisked or worse! I had letters from my neurologist and physiotherapist, I even had copies just in case. The reality was so undramatic I was almost disappointed. Nobody blinked an eye – apparently I’m not the only person who travels with medication. Who knew?

By the second trip last year my MS meant new problems to overcome. Different medication so no needles but weakness in my legs means I’m less mobile. I knew I’d struggle at the airport and was so worried I would be a burden and didn’t want to ruin the holiday. My sisters suggested assistance at the airport and a scooter while in Hawaii. I found this really hard to get my head around as I have been so adamant that I do not want to have to use a wheelchair and to keep walking. When we got to the airport I insisted I would wheel the chair through the airport and only sit in it when exhausted. We picked up the chair and were ushered to the head of the check in queue, with me pushing the chair. My sisters then, not so politely, told me to sit in the bloody chair as people were looking at us skipping the queue. Once I gave in it was plain sailing, other than my sisters driving skills! Honestly the turbulence in the chair was worse than the flight!

It was the same with the scooter in Hawaii. Once I got over my initial horror at needing such a thing I realised how much independence it gave me and that I didn’t have to miss out on anything. We had such fun with the scooter as everyone had a go especially the three point turns in the hotel room.

The trip helped me reduce the fear I have that I will eventually need a wheelchair. It won’t be a bad thing, just a tool to make sure I don’t miss out on life. I have even moved on and gotten a rollator so I can get around more.

It upsets me to think of how long I spent stressing about all this and how I could have enjoyed things more if I wasn’t so wound up. My sisters were great at diffusing my hangups and fears and we actually laughed our way through. In fact they all say they won’t travel without me as we got through the airports so quickly!