Is it too late for New Year’s resolutions? I hope not. If you read my last post ‘Twelve Days of Christmas …in hospital’ you’ll know I have a pretty good excuse. Also by writing these in mid January free from a New Year’s eve hangover and the mindless optimism of the first few days of a year, maybe they’ll be more successful than all my previous resolutions. So…
For the last 5 years I’ve barely been able to walk, only managing a few metres at a time. So I use a wheelchair to get around, although I can walk a bit when I really need to (see Lou and Andy from Little Britain). What stops me walking more is chronic pain from numerous old injuries in my legs that have never fully healed, which is very common with Ehlers Danlos Syndrome. Inactivity has added to the problem as its led to further muscle, tendon and ligament atrophy, which will make progress even harder to achieve. I’ve already tried numerous walking and gradual strengthening programmes but without any lasting benefit.
However my nutritional intake has been much better since I’ve been fed by parenteral nutrition which may help, and for some reason a new year brings new hope and motivation. So I’m going to have another try, or twenty. I’ve got some advice and exercises from my physio. Progress won’t happen quickly, but being able to walk a few hundred yards a day (or every other day) would improve my life a lot. So it’s well worth a huge amount of effort.
2, Gain weight.
In June 2013, after gradually falling for a couple of years, my weight reached 7 stone and 1 pound (45.1 kgs). I’m 6 foot 1 inch tall so that’s uncomfortably, unhealthily and painfully thin. Plus I looked terrible. Thankfully, I then started being fed by parenteral nutrition and over the next 14 months I gained over 3 stone (20 kgs), which was fantastic and frankly life saving. However in the last few months, due to problems peg feeding and time spent in hospital I’ve lost nearly a stone, which has been very frustrating. Plus I’ve moved from a 30 inch waist, to 32, then 34, then back to 32 inch again in 18 months. So my wardrobe is crammed full of trousers.
This should be easily resolved as the calorie content of my parenteral nutrition bags is being increased soon, but we’ll see I guess. I’d like to weigh between 10 and 10.5 stone again (34 inch waist!) That’s still underweight for my height, but I have less muscle mass than your average sparrow these days, so it’s probably about right.
3, Stay out of hospital.
I started this year in hospital with an infection, which was a big reminder how much I hate the places. What was particularly irritating was the infection may have been my own fault as I let myself get dehydrated, (cue a big Homer Simpson style ‘Doh!’)
I’m extremely careful (bordering on paranoid) when I set up my feeding systems, keeping everything sterile. But maybe I need to be more responsible about my hydration levels. If I manage that every day and maintain very good hygiene, hopefully I’ll stay out of hospital for the rest of this year.
4, Have more fun.
That sounds simple, right? Hmm… Before I fell ill and was diagnosed with EDS I used to have tons of fun, without even trying much. But my body is very different now. I use a wheelchair due to joint pain, I can’t eat food and spend up to 20 hours a day attached to feeding pumps by tubes. So having fun has become rather more of a struggle.
But I’m stronger than I was a year ago and recently I haven’t needed to peg feed for as long each day. Joint pain often restricts me, but hopefully in the next year I’ll be able to see friends and my nieces more often and maybe have a few more parties and interesting trips out. I might even have that BBQ I’ve been promising for a decade.
There you go, some simple but challenging resolutions for me. With EDS, things rarely go to plan, but with some effort and luck in 12 months time I’ll be walking further each day, I’ll be a bit fatter, with a nice big smile on my face.