In the halcyon days before MS all I needed to pack for a holiday was my passport, ticket and money. OK, I’m older now, not wiser but the luggage has got heavier and the allowance is lighter. BMS (before MS) it was so easy, I must confess that sun cream wasn’t on my radar and worrying about getting bitten by large flies didn’t occur to me. AMS (after MS) small things like that have become larger. I am quite conscious that if I get bitten I might develop an ulcer on my leg or wherever it bit me. So we need a robust First Aid kit! My digestion is affected by paracetamol, but ‘Husband In A Hurry’s’ blood pressure can’t tolerate Nurofen (a UK brand of Ibuprofen) so we have to take both just in case of hangovers or dehydration, both of which are common on cruises. My MS has developed into quite high maintenance now. I need a lot of stuff, pain killers for trigeminal neuralgia, blood thinners and statins because they ‘might’show some stability in secondary progressive MS. A catheter; just in case, a complete new anal irrigation system; just in case and extra clothing; just in case. As you can see, my case is quite heavy!
I pack extra of almost everything, I have a tendency to spill things down me, I knock things over and I bump into things a lot. So I need spare tee-shirts and surplus trousers. On cruises we change for evenings, which means Day Wear and Posh Stuff.
As I start packing, five weeks before we go, my MS brain means that I’ve forgotten what I’ve put in my case and requires me to unpack and repack on a fairly frequent basis. I rely on PAs to help me, but even though they are great I don’t trust them like I would myself and as a result I’m sure I take too much in the way of clothing.
I always think that I might need three jumpers even though we are going to the Azores, which are supposed to be warm, but you just never know. Despite there being three thousand passengers onboard I feel that I need to wear a different outfit every evening, no one will ever see me twice on this adventure!
The most important things however, are not my clothes. The cruise will not be a disaster if I need to have clothes cleaned it will, however, if my super-pubic catheter becomes dislodged or damaged.
Who knew that my life would ever become so dependent on hoists, commodes, ramps and ‘disabled accessible’ cabins. MS is an invisible disease, people see the wheelchair, but they don’t see the pads I have to wear and they aren’t witness to my personal care and I don’t just mean getting dressed. I never expected to be hoisted out of bed in the mornings, but despite all of this I will never lose my self esteem or stop cruising!