Simple everyday tasks have become such a battle, it often is too much. Some days are better, some days are just too much. Today I have had horrendous back pain, that extended down my legs, especially through my left leg and & foot and then up my back to my shoulders, affecting my whole body. It causes my body to spasm, to lose muscle control, to think slower, respond slower, meaning driving is not a safe option. The medication I am on, also affects this. I have had to learn my limits and accept these limits. Losing days where I cannot drive can be very frustrating. I am very thankful to have some wonderful friends and family, even if it means no "sisterly taxi" for a day or two!
A flight of stairs is enough for me to seriously question do I really need to go somewhere. If I need to walk a longer distance than a few hundred meters, I need my crutches, if its for a long time, I need my wheelchair. Just putting a pair of shoes on, can flare up my leg, causing extreme pain, burning throbbing pain and my skin will turn red and swell up. This can be a nightmare when even trying to do something so simple like shopping! Just because we don't have an illness that can always been "seen" doesn't mean we are not ill!! And the nerve of some people when out shopping!! Making out how much effort they have to do to move around someone in a wheelchair or make you move out of their way, sighs!!! That can be another blog post another day!
Today it is my Dad's birthday, I am cooking him a cake and dinner! While cooking is not my favourite past time, I cook a mean chocolate cake and as well a nice meal of steak, mash and veggies....all covered with gravy of course :) It'll be a great struggle to do this, but I have a moveable stool to which I can sit and cook from, reducing the stress on my legs.
Since I spend most of my day at home, usually between bed, the recliner and lounge on the back deck, depending which is more comfortable, I get left with some household chores. Unfortunately even hanging the washing out, vacuuming or washing up can be a huge struggle some days. Moving aching shoulders that stretch painful back muscles to hang out washing, can be one of the worse things. I often need to use a shoulder sling and wrist guards, just to move around.
Some days, I just cannot get out of bed, my body aches in extreme pain and I just cannot get comfortable or move freely. On those days, I stay in bed, drifting in and out of sleep, highly medicated as to try and ease some comfort. When my fingers are swollen and ache, even using a phone or ipad to try and cheer myself up, is a massive struggle. My friends all enjoy my jumble of letters that should be words and we laugh over it.
While medication helps to reduce some pain, it's not consistent in reducing all pains, nor the extreme aches and extreme exhaustion. Medication for Chronic Pain is usually NOT covered by PBS, making it expensive. Alternative treatments and medications are also expensive, life is not free and neither is genuine help!!
So next time you go to do a daily task, like washing up, driving your car, doing the shopping - just stop and think how someone with a silent chronic illness would go at simple things: it'll change your thinking! We don't want your sympathy, we just want you to understand!!
And yet, after reading all this above, people will wonder why we are struggling, still unheard by medical boards, the government or anyone really. All governments do is complain about the cost of medications and procedure treatments, yes it costs billions of dollars every year for chronic pain health...but that still does NOT mean we should have to live in the dark, struggling, being told that you're on a waiting list, you're on a waiting list, oh we'll trial this first, then this, then this, but its an 8 week waiting list to get into any of those!!! Why should anyone in Chronic Pain have to wait months on end, just to see a specialist and talk through a chronic pain plan. There are so little amounts of Doctors and medical professionals who actually care about Chronic Pain, to them, we say thank you, but to the rest of the world we say it's time to learn and realize it is real and we are NOT hypochondriac depressed people, looking for attention!!
Well, I'll continuing ranting another day, at another almost 2am time :)
Kate
Oh Kate, I really feel for you. It is really hard for people to understand what you are going through unless they have also been through what you are experiencing. And even then, those that have, sometimes find it hard to remember what it was like. Pain is easily forgotten once it is no longer experienced. Keep your chin up, and if I can help in any way, please let me know. Noels :)
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