Category Archives: Fibro

Why I Really Missed PIP by One Point.

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As I mentioned previously, I applied for Personal Independant Payment in 2017 and took it all the way to appeal.

And I lost. By one point. I am one point not quite ill enough to receive the  money the government claims I’m entitled to. 

Except I’m not entitled to it. Not any more.

And everyone keeps telling met to reapply. That finding that one point, by starting from the beginning, shouldn’t be too hard.

But, for right now, the government has won. I don’t have the energy to start all over again.

And that’s what they are counting on, really. That they’ll wear down those of us who, according to them, are ‘fine’, so we’ll give up. Go back to work and not try again.

So I am, currently back at work, part time. 

And I’m exhausted and in pain. Like always.

But I’ve also been thinking about why I actually didn’t win my appeal. 

Because I don’t think it’s because I didn’t have enough evidence as to why I get anxious when I go some place new (the point I was trying very hard to get).

I think it’s actually because the appeal committee, who I met in person, saw the Robyn who covers her pain. And her exhaustion. 

Because that’s what a lot of us with invisible illnesses do. We cover. We put forth a facade of being normal. Of not hurting. Of being fine.

It’s not that we’re faking sick. We’re faking well.

And it can be hard to turn that off. To show how we really feel. 

How every step hurts. How our words get jumbled. How tired we actually are.

I am so used to letting no one, not even my family, see how bad I really feel, that it’s hard to drop the act and let it show. 

And why do I keep up the act? Because I have to. No matter how I feel, I have to get up and get Adam ready for school, and now me ready for work. I have to make lunches and help him with his uniform (Yes, even at his age. He’s still autistic, after all, and still has issues with fine motor control.) and wait for his bus with him.

Sure, Simon helps as much as he can. But he leaves the house over an hour before we do, to make it out to his campus for his first class. That might ease up a bit if Ulster ever actually moves to Belfast. (Perhaps a post for another day…)

So, as it always has, it falls on me. Except now, after Adam is on his bus, I’m on mine, off to work.

And I love my job. I really do. It’s the Administrative job I’ve always wanted in terms of autonomy, power, and the back up to use it. 

But it takes it’s toll. Even if I do not have a physical day at work, I still end the day exhausted. And some days have to be physical as there is a lot of cleaning up and organising my poorly neglected office needs.

So I spread that work out and make sure I have whole days of just sitting at my desk doing other things.

But even on those days I do 5,000 steps without even trying. Just from walking around the office.

It will become somewhat easier in a few months when we buy a car, because I won’t need to do any of the walking I do now to get to work. It’s not much, but what it is takes some of my energy. Not that driving isn’t tiring, but I don’t find it tiring in the same way.

But what I really want is to not have to wear the facade, ever. 

But I have to. 

Because my kind of illness? The invisible kind? Is still not believed by a whole lotta people. 

So if I grimace in pain, or don’t laugh off my word confusions or give in to the exhaustion as often as I truly want to, then people would think I was faking. Pretending to be ill.

When, really, I’m pretending to be well.

No Explanation No Defence

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The other day I posted this on my Facebook:

Now here’s Tee, with your weekly Lunch Making Report: Tee?
Thank you, Tee.
On Monday and Tuesday there were no issues. On Wednesday, sandwiches were put into the wrong lunch bags and Daddy mourned his lack of cheese but enjoyed the white bread while Adam had a tear or two for brown bread, but ate the filling and an orange provided by Mrs L.
On Thursday, Adam had pasta so he was safe but Daddy’s sandwich was without mayonnaise. Mummy realised this around 930a and text Daddy to warn him. His reply was frown emoticon.
And now today, Friday, all lunches are within parameters and the family gave Mummy a big cheer!

Quite a lot of people liked it or smiled at it.

And then came the judges. Saying they could make their own lunches. And how in their house it was every man for himself.

And I started to get defensive. There are reasons, good ones, as to whyI make Simon and Adam’s lunches every day. Also, I shared this to poke fun at myself and lament my badly functioning brain, affected by a combination of fibro and perimenopause.

The original maker seems be lost, but I got it here: http://questinggirl.blogspot.co.uk/2014/08/menopause-mothers-10-ways-to-feed-your.html

The original maker seems to be lost, but I got it here: http://questinggirl.blogspot.co.uk/2014/08/menopause-mothers-10-ways-to-feed-your.html

And I started to defend myself.

And stopped.

Because why should I? The reasons Simon and I have for the way we run our family are just that; our reasons. I don’t worry about what happens in your house, so why are you so concerned about mine?

Yes. I shared the above. As I said, as a way to blow off frustration and to write it what I thought was a funny way. Not because I was looking for advice or opinion. It was just one of the many ways my poor brain is these days.

So I’m going to still post things like this.

So feel free to judge me, offer advice or do whatever you need to do to get through the day.

But I’m going to stop explaining and/or defending myself, my choices and my family.

https://www.etsy.com/uk/shop/KnittedByATee

The Winter of My Disconnect…(Too good to pass up. Sorry. Not sorry.)

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About two months ago I suddenly realized I had no idea what I’d been doing all winter. I mean, my son was alive and happy, my husband likewise, and there were a few knitting bits around. But I remembered very little of it. I had been black in the Land Of The Black Dog and didn’t even realize it.

It had, indeed, been the winter of my disconnect. I can remember days, weeks even, of seeming to be looking out of my own eyes. Of being someone else inside me, watching me go through my life.

When I finally ‘confessed’ to Simon, he said he knew something was wrong. That I had spent whole weekends in bed, asleep. He didn’t say anything because he knows me and knows I would deny it, even bury it, until I was ready to say ‘It’s bad again.’

So I saw a GP at our practice and we switched me to a new medicine that worked for a bit. And then didn’t. And then I saw another GP and actually had an anxiety attack right in front of him and he switched me again. This time to Venlafaxine. Which has not only helped my anxiety, it’s helped my fibro.

To the point that I am nearly pain free. I am still tired a lot and my brain is constantly leaking out of my ears, but I can deal with that so long as I’m not in pain!

I mean, I still have pain. I’m not cured or anything. But I am so much better.

So…what have I been doing?

This:

https://www.etsy.com/uk/shop/KnittedByATee

https://www.etsy.com/uk/shop/KnittedByATee

Yup, I launched my shop. And immediately had two custom orders with a third happening soon.

I also sold one item from the shop directly.

I’ve also been doing this:

Yes. That’s a sewing machine. I’ve got the two Great British Sewing Bee books and I’ve started sewing from a pattern. My first shirt is nearly done and I am so chuffed with myself!

So I am feeling more connected to my life and my husband and my son and my craft. I’m imagining studio space through out my house as the dining room table is a bit inconvenient.

And, as the icing on the cake? In one week from tomorrow? I’ll be in Berkeley loving on my first two babies.

I may acknowledge their parents and my parents as well. 😀

I think I’ve said it before

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But I’ll say it again;

Constant pain can be gotten used to. Even expected and treated like a friend. An annoying friend, but something that is always there.

Sudden unexpected pain cannot. But it usually passes quickly.

However, sudden unexpected recurring pain can never be gotten used to, nor does it pass quickly.

All day today I have had sudden unexpected recurring pain in my upper left arm. Just sitting, not moving that arm, just surfing the web and BAM pain.

Just for a second. But sharp. Like someone stuck me with something sharp.

And then it’s gone.

And then it’s back.

And then it’s gone.

And then…

And it’s exhausting. It’s mind blurring. It’s debilitating. It’s distracting.

It’s why I wanted to clean my whole downstairs today but only managed to do the dining room a bit of the kitchen.

It’s why I want to pitch to clients and/or join a freelancers site but don’t because I don’t feel I can commit to deadlines.

It’s why my son watches so much TV in the afternoon.

I just want to be a normal, healthy 46 year old.

Wouldn’t that be nice?

So, Yesterday…

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Was my 46th birthday.

I’ve been struggling quite a lot with this birthday and I’m not really sure why.

I mean, I know part of it is that I’m now officially closer to 50 than 40 and 50 seems huge.

40 wasn’t huge because I was 20 weeks pregnant at the time with the baby that would become my wonderful little boy. So I was huge, but the birthday wasn’t. 😀

me and adam today and yesterday

Adam when he was the baby on the interior and yesterday when he was the boy waiting for the school bus.

 

I am, for the most part, happy and content with my life. I have a husband and son whom I love. I have more creative energy than I’ve had at any point in my history. And I enjoy what I do every day.

Yes, I’m sore. A lot. My arms ache and my legs ache and I’m tired a lot of the time. Such is life with Fibromayalgia, after all.

But I’ve been spending the time leading up to yesterday trying to figure out why it seems so huge and reflecting on my life.

And I recognize that I am not where I thought I’d be by this time in my life. I thought I’d be a published writer (well, I am, but only on the ‘net) and/or a professional theatre designer or at least fairly high up in the career that I started on at Kaiser about 20 years ago.

All of which was derailed, very firmly, by my first psychotic break at 25.

But I am, as I said, happy and content.

So why is 46 so hard?

It’s not the signs of ageing. I know I don’t look 46, for one thing. And I don’t really mind the signs that do show my age; my grey hair, my laugh and frown lines and the fact that I seem to be getting my mother’s hands, but without her lovely long thin fingers. 😀

So…why is 46 so hard?!

I have no idea…

 

Lessons From The Not Quite 5 Year Old…

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“What did you do today mummy?”

“Well, I walked you to school and then I went to the GP’s office for prescriptions and then to the chemist to get them filled and then to the supermarket for bread and pancakes and cereal bars. And then I came home and had a coffee and did some knitting and then had some lunch and then came to meet your bus. So, really, I did nothing today because I’m not feeling well. Again.”

“But you took me to school and then went to the chemist and the supermarket!”

“True, but I meant I didn’t do any housework today, like I had wanted to.”

“But you knitted! That’s housework!”

“Is it?”

“Yes.” With nearly 5 year old conviction. “You did lots today.”

Who Am I If I’m Not In Pain?

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So due to an incredible set of circumstances, I am remarkably pain free.

First I took up knitting to help my arthritic hands. And it worked. My hands are much looser and practically pain free. I still get twinges and opening jars is beyond me, but day to day activity is so much improved I am actually thinking about trying to draw by hand again.

Then the chemist couldn’t get me any Xanax. It’s not a drug that is prescribed in the UK, since the NHS doesn’t cover it (I’ve been paying private ‘script charges on it for years), so the European distributors haven’t been keeping it in the country. So I am in the process of switching to Zoloft. Guess what else Zoloft is good for, along with anxiety? Fibro pain.

So despite the fact that the med switch has given me some insomnia, I’m not really in fibro pain at the moment. I have nearly a full range of movement in my arms and the new pains that had started in my upper legs has totally gone. I’m still getting the fatigue and fibro brain, but I can deal with all of that, if there’s no pain.

Finally, I have been working with a podiatrist to pinpoint why my left leg hurts so badly, even with having had cortisone and exercise and losing weight and all those things. And for the first time someone looked at me and said ‘Your left leg is shorter than your right.’ Around 30 years my left leg has hurt in one way or another and this is the first time someone has noticed that. And that is skews the way I walk and the way I stand.

So I have a temporary thing for my left shoe that I am to try different thicknesses on, using, belive it or not, beer mats to raise or lower it as feels comfortable. And in four weeks I go back to report and have casts made of my feet and custom shoe inserts created. Just one day of having this temp thing in my left shoe and my leg feels better.

So how does it feel to not be in constant never ending pain?

Fucking terrifying.

I am trying so hard to not get my hopes up that this is how I will feel all the time now. I am trying to treat each day as a gift of painlessness.

And I’m not sure who to be any more. I’ve been Tee, the woman with three chronic pain conditions for a long time. I can’t even imagine what I might get done if I’m not spending days on the sofa just trying to get from one minute to the next.

But I am going to find out!

The Absence of Expected Pain

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Today I finally got a cortisone shot. One I’ve been trying to get for over two years after my last one helped so much.

Why it’s taken two years is not the point (God Bless the NHS). The point is that today my leg is pain free.

My leg is never pain free. If my hip feels okay, my knee aches. If, by some miracle, both of those things feel fine, my fibro flares. But today, temporarily, thanks to the anaesthetic that is part of getting a cortisone injection, I feel no pain at all.

It’s disturbing.

If some part of you hurts all the time, and I mean 24/7/365, and then suddenly doesn’t? It’s a shock to the system. It almost makes you want to cause yourself pain, so you can recognize your own usually painful place.

And, in this case, I can’t take advantage of it feeling so good. I’m on ‘sit as much as you can’ for the next 48 hours and then ‘you can go more or less back to normal, but do not over do it’ for the rest of the week.

So tomorrow Simon is walking Adam to school. And my mega shopping excursion on Friday is being cut down to a hair cut and then straight home.

And by then some of the pain will be back anyway.

In fact, some of it will be back by bedtime tonight.

Cortisone won’t help the fibro. Dammit.

Fever – Day 5

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Yes, you read that right. Adam has had a fever of various levels since Monday. As has most of his class and after school care. Simon wants to know why it’s not on the news. I said because it’s so common as to be un-newsworthy.

Now I’m having a fibro flare, a cold, a cough and perhaps a touch of D&V, at least the D part.

I also did over 10 hours of work this week. With Adam at home and then dragged to my client’s office to transfer files.

Simon said he’d be home around 2 today. I’ll be going to bed at the point.

I may get up in time for the school run on Monday.

 

Why I am not blogging

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because I’m tired, ill and sore.

Because I’m sick of writing about being tired, ill and sore in greater than 140 characters.

So if you want to read what I have to say, follow my Twitter, @tee2072.

I’m sure I’ll be back to the blog at some point. Maybe if something interesting happens that doesn’t involve being tired and ill and sore.

Like a miracle that cures me.