Hello and welcome to the third instalment of Shining the Spotlight on Chronic Illness and disability. Today Q&A is brought to you by Kaye. If you’ve missed any of the previous posts they are linked above.
Introduce yourself and tell us a bit about you?
I’m a dual national, UK Aussie. I came over (on a two year secondment LOL) almost 20 years ago with my husband and 5 year old son, leaving family and friends behind, but trying to keep in touch as direct family members dwindle. I want my son – now 25, to know his UK cousins and aunts and uncles. I was a primary school teacher for 20 years and am now a writer.
Chronic illness(es)/disabilities I have?
My symptoms/condition began?
I started with chronic pain around 12 years ago. I had a trapped nerve and had an ACDF op to replace a vertebra in my neck and untrap the nerve. After that it seemed to be all downhill!
My diagnosis process was?
I was diagnosed with Fibromyalgia and Chronic Pain around 10 years ago, and tried many things to relieve it, saw various specialists, tried ketamine transfusion, but eventually the medicinal regime I’m on now – tramil, gabapentin (neurontin), panadol osteo, endep and the occasional temaze. Last year I had a neuromodulator implant put into my spine (a bit like an internal tens machine), which was great at reducing the pain in my lower back by about 50% – but the fibro still seemed to limit me.
The hardest part of living with my illness/disabilities lis?
Hardest part is feeling useless. My husband has learned about FM as we’ve gone along and does a lot around the house including much of the washing and the ironing. I can ask my son to do things like getting down onto the floor to switch the fire on and off and empty the dishwasher. When I get energy and do a good bit of cleaning (will I ever learn!) then I’m in pain for a long time after and may take Lyrica which I have for breakthrough pain but don’t take regularly as they seem to put weight on me. When people are kind (like the other volunteers at my volunteer job in day oncology) I can wonder if I’m really helping, but boy does it help put my woes into perspective!
People assume that?
Those who don’t know about my illness think I’m a lady of leisure and my husband works full time. I don’t really contribute financially except for a few sales of my book and printable planners. They must think I’m lazy and selfish, pursuing a writing career, and not doing much at all. I think they think I chose this lifestyle. Whilst I love writing and being free to go out for coffee and walk the dog I mourn the career I had in education where I was a deputy principal and acting head teacher. Only because I take part in a quiz at our local pub do people realise I have intelligence – though my fibro fog memory sometimes tries to foil that.
A typical day for me involves?
Typical day: It may have been one o’clock when I went to bed so I may sleep in an hour or two after my husband leaves at 7.15am. Then the routine of opening up the blinds, looking at the dirty counter tops in the kitchen (but leaving them for now), making a hot almond milk drink and putting the computer on. Taking my tablets. Checking emails and staring in dismay at the amount I haven’t deleted yet (over 1,000 I intended to go back to and read/action). Working out which ones I need to do something about now and saving the rest (hence this is two weeks late). If I don’t have an appointment (medical or otherwise) then I walk the dog – an hour of gentle wandering the streets and if lucky persuading my son to come with me, and if lucky persuading him to stop at a cafe for a coffee/soft drink. If a friend phones for a coffee then I’ll meet her at our closest shopping strip – I don’t want to risk her judging me on my untidy house! Then, head clearer, its on to work. I’m writing a children’s book, plus designing printables for sale on Etsy, plus working out how to promote them or doing research. A lot of my day is computer orientated. When the muse is with me I can work for hours, but then have to stretch gently, or stand at my desk as my muscles seize up. I check facebook to see what my rellies in the UK are up to, and maybe post a few remarks in my author group or that of other writers. Activities like getting the mince out of the freezer and knowing what I’ll be making for dinner, make it easier for me later, otherwise I feel I’m in a downwards spiral resulting in inactivity. At small points in the day I try to do little things around the house e.g. spray the bathroom mirror and counter and think of the sweeping action as meditation or yoga. As evening approaches I’ll prep the tea ready for the oven and look forward to a warm bath – its relaxing and muscle easing and I often read in the bath for half an hour. Then as 7pm approaches I’ll don my evening uniform of nightie and dressing gown and sort out dinner. When my husband comes in he’s stopped noticing that I’m in my nightwear. It’s the norm. We eat dinner, chat, watch tv, read, and I often get creative with wire wrapping or bookmark making. Then somehow I’m awake and alert and will often stay up hours after my husband goes to bed, despite telling myself I will be there before midnight. And so it goes on.
The one thing I cannot live with out is?
One thing I cannot live without is Facebook! Without it I couldn’t keep in touch with my family in the UK as much as I do. Since losing our parents and becoming ‘the older generation’, we’ve tried to get to the UK every two years and welcome nephews and nieces over here. Each Tuesday evening I Facetime my sister and hear all about her life and what’s happening there. Through Facebook we find out about my husband’s family too. It’s great for groups such as ‘Positive pain Pals with Invisible Illnesses’ and writing groups and wire wrapped jewellery groups etc. I know a lot of people hate Facebook – but for me it is a lifeline I’d hate to lose.
Being ill/disabled has taught me?
Tolerance and trying to be non-judgemental You can’t judge people on what you see on the surface. We all try to look good on the surface because explaining to people about FM or chronic pain is too taxing. Other people have their issues. I try to be nice to grumpy people – who knows what their going through?
What advice would I give someone recently diagnosed?
Learn what you can about your condition. Knowledge is power and you may need to stand up for yourself even to your doctor. Find a good specialist on recommendation and ask to be referred. My GPs have always give me a referral if I’ve talked knowledgeably enough about what I think I need. Conversely don’t believe all you read! There are charlatans out there who tell you to buy their snake oil to cure your illness. And finally – have hope. Medical science is progressing rapidly and eventually diseases like MS and Cancer will have a cure. The same goes for other ailments. Pace yourself to remain strong and hopeful.
My support system is?
My husband and son who help around the house, even if they’re a bit tired of my moaning and groaning. My GP’s who are happy to prescribe what I need, even if they do sometimes have to ring into the medical line for the Opiate (like when i went on holiday overseas and wanted extra before the script was up), and listen when I say I’ve heard about something new, and send me to specialists. The specialists. Whilst the neurosurgeon for my original pain 12 years ago was a horror story, the others since then have been respectful and kind. I’m learning to stand up for myself.
If I had one day symptom/disability free I would?
Go on a bike ride!
One positive of having a chronic illness/disability is?
Making online friends who understand the illness and are in the same boat is brilliant. It’s lovely to feel you can offer them help; it makes you feel worthwhile if you can sympathise with someone who’s had a rotten day. It makes you feel a better person if you can understand what others are going through and can help put your woes into perspective – not making out they are nothing, but diminishing them for a short time.
The spoonie/disability community has been?
The spoonie community is amazing (mostly). I tried another group before i settled into the Positive Pain Pals one and was so disappointed that people were unkind to one another, or resorting to a kind of one-upmanship of ‘my illness is worse than yours’, or know-it-alls. I got our because I felt it was pulling me down rather than lifting me up. I can’t recommend our lovely fun group highly enough, with it’s games and knowledge sharing and allowing to vent in a safe place. It really is a life saver.
Thank you so much Kaye for taking part. Please check out Kaye’s Pinterest
Kaye also has an Etsy store where she sells a health planner which has specific sections for chronic pain. If you are interested in tracker your illness, the planner is available here
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