#fibromyalgia

The BB’s Book Club

Posted on by Gertrude T Kitty

 

I met my husband when I was 19 and he was 27.  He was in a friendship group of boys and girls he’d gone to school with, or that lived on his estate.  I was a loner; fairly reserved, so I was socially out of my depth among the tight-knit, strong, sassy, independent women in the group.  They knew who they were, they were in established relationships, they were loosely friends with my husband’s x – it was awkward.  But I was in awe of their bond, their easy banter, their shared experiences.  Thirty years later I’m still a little envious of their remarkable rapport; they have this honest and pure sisterhood.  They’ve been there for each other through school, boyfriends, breakups, pregnancies, miscarriages, raising kids, losing family; they are totally solid.  I still sit on the peripheral of this dynamic but it’s a warm, accepting, fun place for me to  be.  It’s a bit like when you are given a honoury degree.

There was a baby shower a while back.  It would have been so easy not to go.  It was a long enough car journey for my unsteady neck to be bobbing up and down.  My alcohol intake was down to water with a hint of wine and my conversation was dried up.  But I pushed myself.  And I’m so glad because Jen, who’d recently lost her husband, who I barely know, had formed a book club.  They’d met once and she said come along.  Whilst coping with her loss, she was thinking of me and my limitations and I thought fantastic; I can do this.  To live with myelopathy you need to focus on what you can do and let go of what you can’t…otherwise you’ll drive yourself mad and into a wheelchair.

So I find myself part of this sisterhood which I am totally embracing.  I have not missed a book club night.  They are a Come Dine with Me/Through the Keyhole fusion.  I’ve had great food, lively conversation and I’m living.  I’ve been so pleased with myself reading the book and engaging with friends.  It’s been a struggle because I am deteriorating and I am an unreliable guest.  Two weeks ago I was in Charing Cross, with head pain that immobilised me, half distraught thinking what the f**k’s gone wrong now, half angry that ninety percent of the health professionals attending me are clueless about my condition.

Since coming home my priority has been making it to Book Club.  Not tidying, not cooking, not shopping, not pleasing anyone else, just managing my pain and my mobility and getting to my lovely friend Paula’s birthday who was hosting Book Club.  I’d spent the week doing the complete minimum only stretching and moving around the house.  Come Saturday morning I laid in bed, pain in every joint, my head a ton weight sitting on a brittle neck, my stiffness wretched.

Three things got me to book club:

  • celebrating Paula’s birthday who’d put on a scrumptious dinner and dessert,
  • ensuring I remain in the inner circle because it’s a very lonely, miserable existence if you don’t help yourself to socialise
  • MYELOPATHY.ORG – being in hospital was a painful reminder of how misguided so many doctors and neurologists are.

My situation is ridiculous.  There’s Paula, at work all week, shopping for food for twenty guests, spring cleaning, cooking and I’m struggling to participate.  It’s my perfect night and it’s touch and go whether I’ll be well enough.  But what’s been lovely is no one pushes me for answers about my condition, I’m just accepted and treated gently.  I feel so lucky to have these ladies in my life.

But the icing on the cake is their enthusiasm and willingness to support our charity.   When I was in hospital I was so demoralised by the complete lack of interest neurologists have in myelopathy.  I thought, I’m doing something about this NOW!  When I say ‘I’ that means someone else because I can’t raise money for Myelopathy.Org without being helped myself.  So I asked the girls to donate a pound each time we meet for Book Club and Paula was so gracious about me hijacking her birthday to plug and collect for Myelopathy.  Particularly as I’m already the most needy member.  And I feel guilty that my participation is like hit and run.  I’m in there with the food and the book review and then I’m off.

 

But seriously when my husband came for me at about eight thirty my head was pounding and the car journey made me sick.  I was up till 2.30 am with severe body pain but I kept thinking this will pass and then I’ll count the money, blog and get my husband to deposit the funds raised during the week.  I’m still in pain, I’m doing breathing exercises right now like I’m in labour, I’ve taken Oxy and Tramadol but it was worth it; I had a great time last night.  I know I was fuzzy headed toward the end, I had to keep moving around because pain was creeping in and my balance was starting to waiver and my phone confused me.  It affected the quality of my goodbyes.  I wanted to hug and say thank you to each book clubber.  They probably don’t realise what a positive impact they have on my life…but I am so grateful – thank you ladies. xxxx.  Also you gave more than a £1.

On our Facebook page we often chat about how our disability comes into question.  That how we look doesn’t reflect our inner pain; which is true of many debilitating conditions like arthritis, autoimmune disease, fibromyalgia. Then there’s how our mobility alters so precariously; it’s no secret that I could be in bed, rigid with pain one day and in Nero’s the next.  Also age is used against us.  For some reason people think the younger we are, the better placed we are to cope.  Actually it means our spines have given up way too early and if we don’t conserve what we’re left with we’re in trouble.

There is so much heartbreak and agony in the world; it’s hard to know who to help and how; often we don’t have the time or the resources.  Usually I donate to Crisis at Christmas.  This year I want to donate something to homeless teens/young adults.  I can’t fix the world but if you help one person then that’s brilliant.  When those around me support Myelopathy.Org they are supporting me.  I find coping with day to day life challenging. It’s very hard to fight your corner when you’re in pain and exhausted and so we rely on our friends to accept us and charities to be our voice.

Thank you ladies you raised £33.10 for MYELOPATHY.ORG.  Thank you Paula for your patience, I’m getting disruptive in my old age, but it’s because you’re my friend that I had the confidence to butt in.

 

 

 

 

 

 

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Pill-box-gate

Posted on by Gertrude T Kitty

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.

No.

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.

Pillboxgate.

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.