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:

  1. Taking paracetamol for a headache is fine and so is taking an antidepressant when life feels overwhelming
  2. Listen to the people around you – family, friends, care team… they all spotted my flailing before I did.
  3. 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.
  4. 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.
  5. It is really difficult to admit you need help, it’s even harder to ask for and accept it when it is offered.
  6. 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 😉