My mood over the last month has swung, dived and crashed. It has been a bit of a bumpy ride for me, my family and my marriage. Sometimes I pass a mirror and catch a glimpse of myself and I look so stern. I’ve always been smily and giggly, one of those happy annoying people, but longterm pain has altered that. It’s evident on my face, I see it in my eyes, pain and impatience. My patience used to be infinite, the only time my back would be up is if someone was being treated badly. Now the smallest things upset me; like a dirty plate left in the sink. I’m snappy and blunt. I’ve never suffered PMT and I think I’ve gone through the menopause but I can’t confirm that because with myelopathy everything else goes on the back burner. I’ve never discussed the menopause with my doctor, or HRT, so maybe there are other contributing factors to my moods.
What’s really affected me is my inability to write and blog. I was so near to getting my book published and then crash, I’m hit by the myelopathy bus which now has a passenger Fibromyalgia.
Myelopathy pain is very specific and recognisable to me. It’s in my head, neck, shoulders and arms. There’s a flavour to it, like a cough candy. My medication has pain under control once I’m static; bending, reaching, lifting, the car – then I’m in trouble.
Fibromyalgia though is a monster. It floors me. You could count to a thousand and I’m not getting up. You’d think that pregabalin, amitriptyline and tramadol would contain it but no…it’s that bad guy that keeps getting up again and again.
It’s a very common condition, particularly in sufferers of myelopathy. One day I’m doing ok the next I’m so stiff I can’t turn in the bed or sit up and pain runs the length of my body which is sore to the touch. Moving my head is a very bad idea. There are three symptoms that I find the most difficult to cope with: IBS, exhaustion and mental impairment.
I’m at the stage now where I eat mainly soup, toast and mashed vegetables. Everything sets my IBS off and the pain in my stomach is debilitating. I also suffer from lower back pain, I have a couple of deceased disks there and in my thoracic area so when the IBS strikes it feels like my whole lower torso is in pain.
Exhaustion is the second symptom. I’m barely on the computer ten minutes when my eyelids flutter, my vision zooms in and out and I’m falling asleep. I sleep so much I don’t know where 2017 went.
So you can see it is hard to blog and to edit a book when your stomach has swelled to the size of a whale and you can’t remain awake. It’s also hard to edit a book if you are nonsensical. You’d think using my imagination, researching ideas and theasaurasing would exercise my brain.
Writing, reading, crosswords, word searches they are not working. Something is very wrong in the faculties department. It’s more than forgetfulness that comes with age. It’s not being able to ask for coffee in a coffee shop because you can’t remember that coffee is called coffee even though you are surrounded by the word and the product. It’s walking away from the cash point without the cash. It’s not knowing your children’s names. It’s posting letters without stamps. It’s being in the wrong restaurant when your friend is in the right one.
In the beginning these little peculiarities were infrequent and something to laugh over. Now they are regular and impact on the frustration I already feel because of my immobility. I’m now physically slow and mentally slow and my dream of being a published writer is slipping away.
Am I coping? I think so. I’m meeting friends outside of the house, going to different coffee shops but the journey in the car cripples me. I’m persevering with physio and my swalking. For each day I’m active I’m spending two/three days in bed.
This morning I was up at seven following seventeen hours in bed. I didn’t intend to blog, I only blog when I have something to say and today I do.
I remember when I was first pregnant. Every mother I came across imparted her words of wisdom. Some of which was invaluable, some not suited to me and some that was judgemental. Although pregnancy is a condition common to innumerable females each pregnancy is unique because each woman is unique.
Myelopathy is exactly this. We might share symptoms but our medical histories are different. How we came to have myelopathy is different. Many of us have other health issues. One person might need 10mg amitriptyline another 20mg. That doesn’t mean the second person is taking too much or not coping. After my first Cesarian I didn’t take any pain relief, not even a paracetamol because I was breastfeeding. After my first acdf I left the hospital the next day and never took pain relief from that point. Yet right now I’m on 600mg pregabalin. Knowing my history would you say I’m someone who can’t cope with pain or is it that my pain is so substantial I need that drug? Maybe right now that drug is weakening my kidneys. If I stopped taking pregablin I would be suicidal – undoubtedly.
As someone whose body used to be a temple; no drugs legal or illegal, no smoking, very little alcohol I take whatever tablets available to make today as pain-free as possible so I can enjoy my family.
My point – don’t tell depressed people to cheer up, don’t tell people on meds to cut down – we’re neither doctors or physcologists.
There is no tomorrow if you can’t live today.