My Crazy MS Life

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!

MS and depression

Life is hard for everyone in their own ways but it isn’t a competition. Everyone has their own version of that metaphorical cross to bear and I have no interest in who’s is heavier. We all motor on and cope the best we can with whatever challenges are current. When I was diagnosed with MS I was lucky enough to have access to counselling and therapy via my GP. I’m a big believer in talking things through, even when the problem cannot be solved (like MS for example), the act of venting gives some well needed release. “Better out than in” is another of my post MS diagnosis life mottos 🙂

Now that I’m back in Ireland I am again lucky enough to have access to a psychologist who listens to my woes and helps me keep things in perspective. Again there aren’t solutions for all my problems but it helps to be reminded that anyone would struggle with this and I’m not just doing this badly. I also have an extended care team in St James’ hospital that includes my physiotherapist, MS nurse, occupational therapist, social worker and consultant (that’s a lot of people to listen to me rant!). Honestly, if a problem shared is a problem halved then mine should be miniscule but it doesn’t quite work that way.

I see various members of the hospital care team fairly regularly so they know me quite well. They are worryingly good at spotting my mood changes, even when I think I’m masking it well and this is how my struggle with depression came to light.

Let’s get one thing straight, I’m not brave (as the spider in my bath will attest to) and not particularly strong. I try to look after my mental health through therapy as well as mindfulness and aromatherapy. However, we all have that potential last straw that can tip us over the edge. Mine was when my cat (soulmate, best friend, therapist… I could go on) died last year. He’d been my companion for 13 years and had been with me throughout my MS journey. No day could be all bad when such a beautiful soul loved and cuddled you. The thought of him not being around just destroyed me and all my “bravery” and “strength” were gone – see I told you, not brave, not strong!

I was distraught. I’d had a precarious little balance that kept me going but now I felt like life was taking the p**s. I was struggling and my care team noticed so now I have a psychiatrist too. To be honest he scared me at first. It’s the job title and the fact that he’s a tall imposing figure. He’s actually the loveliest person, he is so understanding and very gentle when he reminds me that I don’t constantly ask my neurologist when I can stop taking my medication 🙂

Under his guidance I started antidepressants last year. I was really reluctant at first, I thought taking them meant I had failed, was weak or just nuts. Well I am nuts but there’s no pill for that. My psychiatrist helped me to see it was just another drug to help me get through a tough patch

So has there been any change? Well I’m feeling better and engaging more in life. I think I am beginning to cope better with my changing (dare I say progressing) MS symptoms. I no longer think I am weak or a failure for accepting this next level of support.

Here’s what I’ve learnt so far:

Taking paracetamol for a headache is fine and so is taking an antidepressant when life feels overwhelming
Listen to the people around you – family, friends, care team… they all spotted my flailing before I did.
Take care of yourself and know what is normal for you. What is a deal breaker for you might seem ludicrous to someone else. In my case some would say losing a pet is minor but he was so much more to me.
It’s rarely one thing – my MS was changing and so was my home life with the loss of my cat, there is no shame in having a limit to what you can deal with.
It is really difficult to admit you need help, it’s even harder to ask for and accept it when it is offered.
Don’t close yourself down to avoid the problem, talking helps but doesn’t have to be with a professional. Friends and family can take some of the burden, just don’t tell them it was me who offered their services 😉

MS and clumsiness

So on the clumsiness scale today I’m a 7. That means I’m stumbling around but functioning – just about. Half my lunch is on the floor but hey, I still have the other half to enjoy. One of my many life mottos since diagnosis with MS is ‘What falls on the floor stays on the floor’ – at least till my husband gets home. Lets just say I’ll stick to bottled drinks and give the cups a miss for today 🙂

With days like today it’s a good idea to give fiddly intricate tasks a wide berth. I’ll have to reschedule that brain surgery 🙂

So what do I do on days like this? To be honest not a whole lot. I’m suffering from a lack of motivation lately – my get up and go must have got up and went as they say. But that’s a story for another day. Listen, this isn’t all the fault of MS, I have a history of clumsiness and despite the name there’s nothing graceful about me.

The photo attached to this blog is a prime example of what I’m capable of on these days. It shows the outcome of me trying to feed the cat! Remember the motto of what falls on the floor… bless Ed (the cat) he did his best but even he couldn’t eat all that so it stayed on the floor until husband came home!

MS brings daily challenges that have to be figured out and adapted to. It’s not pleasant and every concession made is a little dagger to the heart but still we keep going.

I do however have some suggestions for days like this that should make things a little less painful.

I live in a ground floor flat – best to avoid stairs.
I have an extensive collection of velcro fastening shoes.
A freezer full of microwaveable meals as I don’t think knives are a good idea on these days.
If you can get to a coffee shop then have lunch there. That way if half your lunch is on the floor you don’t have to pick it up!
I have risers under the feet of my sofa to increase the height, this makes getting on and off the sofa much easier.
I have a foot rest so my feet don’t dangle and I don’t slouch when on the sofa. Short legs and sofa risers don’t mix well 🙂
A supply of fruit and nuts for easy no prep snacks – honestly I prefer crisps and chocolate but I’m really talking in ideals here.

I’m always open to suggestions of time/effort savers so feel free to share your favourite coping strategy for the inevitable down day. You don’t need to have MS to benefit from these.

If you can’t be bothered with any of that then I recommend a TV box set of something you like and staying in bed. Actually ignore all this and just do that!

MS and falling

Falling isn’t a part of everyone’s MS journey but unfortunately it has been part of mine. It started with tripping and stumbling but I wouldn’t actually fall. I imagine majestic, elegant pirouettes but realise I more likely looked like a toddler running down a big hill, rapidly losing control.

I vividly remember my first public fall. I’d gone to the local shop to get carrots for dinner. I was just at the shop when I tripped but my legs didn’t move fast enough to save me. I was mortified, I used a railing to drag myself up and went on for the carrots. I’d left the house on a mission and it seemed vital to me at the time that I complete it. So, home I went, carrots in tow. I opened the door and burst into tears. All thoughts of domestication gone. Still I had carrots! Success?

Most of my early falling stories end with a few tears. I think it is the shock of losing control and the inevitable fear of where this illness is taking me. Remember though, practice makes perfect and I’ve had some practice at falling! As much reaction as falls get from me now is a roll of my eyes and a string of expletives. It is, however, getting harder to get back up. I find it important to have my phone at hand so I can call for help if needed or more importantly as I recently discovered to watch Netflix on the floor until I can get back up.

Falling is a strange experience for me and I wonder if it is the same for others. In the few seconds between realising I’m going to fall and the event itself my mind seems to be able to run through a myriad of options that I don’t think would occur to me without out that sense of urgency.

Can I save myself from falling (answer is usually no)
Is there a preferred landing spot? Is there a sofa/chair within my fall radius?
Just go with it!

Another issue about falling is who is around when you do it. I’ve fallen in front of my parents, my sister and my husband on various occasions. I have a friend who is very wary of me and insists I’m not allowed to fall on her watch, I’ll have to break her in sooner or later!

Falling in public is embarrassing but with strangers you know they won’t lose any sleep worrying about you but when you fall around loved ones it is tempting to jump up (as if jumping is ever an option) and reassure them that you’re ok.

So how do I want falling to go in future and how should my audience react?

I don’t want to fall!
If I do fall, do not laugh!! Husband has learnt the hard way that my falls may be spectacular gymnastic events but my wrath is pretty spectacular too.
Do not overreact – an ambulance is not necessary, I just need to get up and don’t need the fire brigade to do so
Ask me how you can help, don’t start pulling and dragging. I might want to milk the occasion for maximum sympathy

Why a blog?

So why write a blog? I’m not medically trained, not particularly skilled in any special way that makes me an authority or an example to be followed. I have however been on my journey with MS for 12 years and have had to learn a lot in that time and quite often I learned the hard way.

There are no hard and fast rules for MS and no ‘one size fits all’ solution or way of coping. I’m not suggesting I have it mastered and that I’m doing it right. I don’t believe in a right or wrong way to live with or without MS (regardless of how much I reprimand myself) I believe in experimentation, try things till you find something that works for you. I’ve tried lots of things, some I liked, some I didn’t. I’m not advocating any specific treatment rather expressing my experiences with those I’ve tried. I believe that some of these treatments would have been more beneficial if I had tried then sooner but I didn’t know about them then.

So, look at this as a list of options to look into, research or try as you see fit. Or alternatively you may disregard as ramblings of a crazy woman with damage to her brain! Either way I find writing therapeutic and if, as I sort through my crazy MS life on screen, I pass on my learnings and discoveries to hopefully help someone then that’ll be the icing on the cake. Oh great… now I want cake!

MS and guilt

This is probably what I struggle with the most. It’s not something that can be solved so I find largely ignoring it to be the best option. However, every now and then you get a reminder and the guilt surfaces again.

MS is not fun and makes life difficult. It interrupts your life plan or goals and forces you to live a compromised version of your life. Not that I had a life plan or path in mind but I’m pretty sure I could have thought of something better than a life of foot drop, fatigue and weakness to mention a few symptoms.

Don’t get me wrong, I’m not throwing myself a pity party (although there are cookies!) In fact I want to consider how MS affects those around me. I’m very lucky, I have a wonderfully supportive family, a loving husband (when he’s not working) and great friends to listen and sympathise when necessary. They all do their best to ensure I have everything I need and anything that might make life easier. I’m not too proud to say I’m spoiled and that my life with MS would be a different story without these guys.

Telling my loved ones that I have MS sucked. My husband was there for the whole process of being diagnosed so he knew as much as I did. Telling my parents was my big concern. Parents just want the best for their kids and to see them happy and independent. With my declaration I shattered that option. They were brilliant, upset of course, but really supportive and positive. I know it is difficult for them to see me struggle and they are really amazing at keeping me going. I spend a lot of time with them laughing and joking. They do so much for me but, as I tell them regularly, they chose to have a child 40 years ago so they only have themselves to blame!

MS restricts relationships a lot. My friends and family have to accept that time with me will most likely be low key and sedentary. No hikes or treks for me! I don’t like crowds and am wary of new places so often don’t want to try anything different. I remember a conversation with a friend where I pointed out that MS hadn’t affected our relationship at all since we sit, chat and drink tea either way so maybe it’s not that big a problem really.

My biggest regret is the impact MS has on my husband. I hate that MS and I have taken life choices away from him. He has the pressure of being the sole earner in our household, we don’t have children and our long term goal is to buy a bungalow! We have to pre-plan everything and are anything but carefree. Even the thought of holidays brings stress.

It also bothers me how much I have to ask of him.

Can you get me this?
Can you make dinner?
Can you pick up the stuff I dropped on the floor? (including me sometimes!)

I get sick of listening to myself so I really don’t know how he copes. Maybe that’s why he works so hard 😉 To be fair, I bark the same orders at my sister when she’s around and she hasn’t killed me yet either.

So really a MS diagnosis is tough on you but also on those you care about and that care about you. I hate that I brought this into their lives. None of us deserve to live with this but we’re coping the best we can and learning as we go. Every new symptom or sign of progression brings the guilt back to the fore. However it’s certainly not all doom and gloom. I have discovered that mindfulness, honesty and openness about how I’m doing helps us all to cope. We still have fun and laugh a lot which is probably the most important thing we do. I’ve learnt to accept help gracefully, in fact, I quite enjoy it.

Actually I’m just wondering how fantastically awesome I must be that people are willing to put up with all this. Anyway… cookies…

A Good Day

It’s one of those rare days where I feel really good and happy with myself. I wish I knew what was different about today so I could bottle it and replicate it every day. I suppose if every day was great we would stop appreciating the good ones and just get used to it. Well my mood has been low for quite some time and I never have as much energy as I’ve had today. Honestly, I cleaned the flat, exercised and came out for lunch – all this by 3pm! It wasn’t all perfect and trouble free, I’m still stumbling around when my legs tire, my handwriting is shocking as I write this and I had to drive to the coffee shop instead of walking. But I suppose that’s the difference right there – I’m doing it all even though I’m fatigued and struggling. I imagine I’ll pay for this activity tonight or tomorrow so I’m just going to enjoy the euphoria while it lasts. It’s like the song by Elbow

“One day like this a year will keep me right”

Well, I’m not that reasonable and quite frankly one good day a year just won’t cut it! However it’s been a while and a day like today reminds me that all the medication and everything I do and all the effort I put in to stay as well as possible, to stay sane(ish) and to put off my descent into a pit of depression are worth it.

There have been a lot of darker days and it’s been rougher for a couple of years now but maybe today is a nice light at the end of the tunnel. I’m realistic though, tomorrow may not be as good and there will be dark days in the future but today I’m hopeful.

As another song says

“I get knocked down but I get up again. You ain’t never gonna keep me down”

I’m very musical today, might go play my ukulele 🙂