When I was in my twenties I honestly thought I couldn’t live without music or books – they were my escape from the world and I needed an escape. However, now I’m in my fifties I’m doing without either – music because it doesn’t feed my emotions in the way it used to and I’m often noise sensitive, and books because my brain injury and floaters make reading a chore not a pleasure.
My former need for music and books has been replaced by needs of a different kind, so I thought I’d share with you the things I currently can’t live without.
- Heat. I get crampy and spasmy a lot, and don’t know how I’d manage without warm baths, hot water bottles, heat pads and my electric blanket to relax my muscles. Of course, in summer I lie in bed sweating like a hog on a spit but smelly perspiration is the price I have to pay for just a smidge of relaxation.
- TENS. As most of you know, I’m allergic to virtually all forms of pain relief and without my TENS machine there are days I’d be climbing the walls trying to cope with severe endometriosis and chronic back pain. Of course, TENS machines make you feel buzzy and it’s a sensation some people struggle with, but I’ll take buzzy over pain any day of the week and for some bizarre reason I often feel that my head is clearer when I’m using my TENS machine which is an added bonus.
- Orthotics. It took me 2 years to find shoe insoles I like, but they make a huge difference to my foot, ankle, knee and hip pain. They haven’t cured it by any stretch of the imagination, but I sure wouldn’t like to walk anywhere without my insoles in.
- SI belt. I have insanely wobbly hips and if I’m going to be walking any distance I wear an SI belt, otherwise I tear the ligaments in my lower spine and pelvis. Over the years, my SI belt has probably kept me out of a wheelchair.
- My wigs. I was born with fine hair, but a combination of the peri-menopause (which can thin hair) and mast cell disease (which can cause alopecia) has caused me to lose probably 40% of my barnet, so 4 years ago I made the decision to start wearing wigs. There’s a huge stigma to wig wearing, however, so I told everyone I’d had extensions put in (no stigma to extensions!) and no-one questioned it because I’ve chosen wigs in the same colour and style as my natural hair – it just looks much thicker.
The great thing about my wig is that I don’t have to expend any energy on my hair, which I used to find exhausting. I now only need to wash it a couple of times a week (I only wash my wig once a week), don’t have to blow-dry it (I find raising my arms above my head absolutely knackering), don’t need to have it coloured or cut (I literally put it in a pony tail and chop the ends off with a pair of scissors myself when it gets too long!) and it just massively helps my confidence to be able to go out with beautifully styled locks – I get compliments on my “lovely hair” all the time! The downside is that because I wear my wig all day every day it only last a couple of months, so it’s quite an expensive beauty regime
- My freezer. I don’t have the energy to cook every day, but don’t have the luxury of being able to buy ready meals because they inevitably contain high histamine foods that I can’t eat, so on the days I feel well enough I batch cook, making several meals at once which I then freeze. I also batch-make smoothies and freeze those, as well as jars of red pepper sauce which is my substitute for a tin of tomatoes. I bought an upright freezer I could put in my shed, as I didn’t have room for a big freezer in my kitchen, and it’s constantly stuffed to the rafters with food.
- My iPod. While I can’t read books anymore, I can still listen to them. I have had huge problems sleeping since I developed ME 25 years ago, and find it impossible to nod off without listening to a talking book. If you have a library card in the UK you can download talking books for free from the library. Don’t use the app though, which gives a time limit on your book loan – do a direct download to your laptop, then return the book straightaway through your account, and you can then keep the book as long as you like and I also put them on an MP3 player for my Mum or share them with my friends.
- Travel sickness acupressure bands. I feel nauseous a LOT, and I do find the acupressure bands help. I only have tiny wrists though, and the bands have to be tight, so I had to put a safety pin in mine to make them smaller.
- The Internet. It goes without saying that the internet is my lifeline to the world. I do my grocery shopping online, talk to my friends online when I’m too exhausted to speak on the phone, bank online, do all my parents’ shopping and banking online…….. I am old enough to remember life without the internet and as a largely isolated housebound person trust me when I say it sucked. Big time.
- My photography. I can’t begin to tell you the difference finding a hobby I am passionate about has made to my life. Not only have I made new friends, photography is a massive distraction for me on days when I feel like I am so unwell that I simply can’t carry on. It has given me purpose, excitement and goals to work towards, all of which help pass days which are often endless and relentless in their suffering and isolation.
- Tea, sweets, crisps & the telly. I know that probably sounds trite, however we all have to have ways of relaxing after a particularly difficult day and when you can’t drink alcohol, can’t take pain killers, can’t exercise and have no-one to give you a cuddle, it can be really difficult to find something pleasurable to help you unwind. For me, there’s nothing nicer than getting into a warm bed with a huge mug of tea and some peanut M&Ms and binge watching Teen Mom or the Real Housewives. A whopping headache is usually the price I pay for the M&Ms, but watching other people’s car crash lives makes me feel better about my own and I usually go from feeling sorry for myself that I am alone to thanking God I don’t have the husbands/partners those women do 😉