When you can’t give it up #fibromyalgia #spoonie

There was a funny post on Facebook today which sums up a lot of us who persevere with long-term conditions.  This is via www.butyoudontlooksick.com; “Googling your symptoms when you don’t feel well is the most efficient way to convince yourself you’re dying”.   But you know what, most of us are not being stupid or silly.  At time we’re just a little bit desperate to find our more, but for me it’s usually about seeing if there is anything ‘new’ in the pipeline to help deal with and manage the condition.

There is the good side and bad side to searching on the internet, but as I have been online for many years, my knowledge and understanding has meant that I know what to look for and stick to the right sites that give me the right information.  In many was this makes is a bit more frustrating, because the reality is that with this condition all you can do is try to manage it.  There is no miracle cure, no miracle treatments, no miracle gadgets.

What I did find though is a treatment called Tamars which stands for Technology Assisted Mobilisation And Reflex Stimulation and is a hand-held device that delivers treatment to ensure the spine is functioning as close as possible to its optimal level.  I wasn’t going to expect a cure with this, but as I have scoliosis I thought it might help a little.   I also received the results back from the MRI I had on my lumbar spine and with another two disc bulges to add to the one in my neck it is certainly worth a go.

I’ve had 3 treatments so far, and it’s certainly painful, but if I can feel a bit more comfy I’d be happy with that.  The number of treatment is usually 6, so we’ll see how it goes.

Work has been extremely busy and my sleep has been poor, but I’m plodding on.   I’ve been attending some of the Business Gateway seminars for my new venture MHScot Consultancy and it’s going well.  I’m just doing a little bit at a time before registering with HMRC and finalising my Business Plan.  I’m spending a few hours each weekend working on the Training Pack that I’m developing for workplace mental health and it’s keeping me motivated.  I have always pushed myself to try to achieve the best I can, and despite all this, if I see something coming together it’s taking my mind off my symptoms and at times keeping me awake!  I started watching a training video and by just sitting there, I found myself nodding off.  As soon as I start to actively do something it stops me falling asleep.

Till next time…..

I never tire coming to the Highlands twice a year. Neither of us own passports and haven’t done for over 20 years.  In fact my husband has never had a passport so isn’t even bothered.  We’ve never once wished we weren’t here. The more recent problems of caravan holidays have been overcome by taking the right comfort padding! Unfortunately my husband has had to give up a lot, but I too miss what we used to do.

We have a lovely tent with all the additional extras.

We have a bike each that we used to take for    mountain biking, sometimes covering as much as 30 miles in one day.  Just before I became unable to take these with us on holiday we had bought a new bike carrier with number plate and had a tow bar fitted to the car.

We’ve done many long mountain walks in breathtaking Scottish scenery.

Long drives have become shorter as a tire more easily. These photos instill many happy memories and there so many people who develop fibromyalgia early in their lives who won’t have had these chances or opportunities.

The day we arrived it was a beautiful evening; very classic of the Highlands. Most of the stuff we bring is pre-packed, and as we always come to the same place we unpack like the same jigsaw done every day. Everything has its place.

The bed is always my worst nightmare and true to form I woke up on Sunday having pulled a muscle in my shoulder and neck. These areas are bad enough without making them worse so I was increasingly restricted for several days. I find driving quite difficult but as I have a good discipline of using all mirrors I’m generally OK.  There are exceptions of course and this was one of them!

Never mind, it did pass. Poor sleep remained throughout the rest of the holiday, cramp in the legs, burning in my heals, restless legs and being unable to find a position that brought any decent sleep. The bonus is though that it didn’t matter because the days were our own.

Going back to work is always hard, but as there is no difference in wellbeing on any 365 day there is nothing to gain by being off.

So, what does this holiday and all the other holidays past and present do? It gives me quality time with my husband, laughs with our budgie, the most amazing wildlife, catching up with lots of books and films and most of all peace and quiet.

I’d swap this life for anything, it’s so good for you, the air is like nothing on earth and makes coping with fibromyalgia easier.

Maybe one day…..

Fibro doesn’t like to be on its own! #fibromyalgia

I was just pondering after putting up the photos I’d taken to reflect what Fibro means to me.  Fibro likes to have friends, it doesn’t like to be on its own, I think it likes something to battle with.  Many of us with Fibro will have other conditions that make the battle with Fibro all the more harder to cope with.  Some are quite minor, some are very variable and others stick like best friends to Fibro.

After mentioning TMD in one of my posts, it was interesting to read others who also experience this.  For me TMD was one of the first symptoms I had.  I didn’t have any muscle, pain or discomfort at the time and I was also running a lot.  I know when I was running I was clenching my jaw quite a lot, so it came as no surprise.  It also didn’t faze me that much because at the time that was all I had to deal with.  I got one of the spongy teeth guards when it turned out I had cracked one of my molars.  That was ok.

But it wasn’t, because then other ‘things’ started to occur.  The next was swelling, pain and numbness in my left hand and arm.  Then neck pain, shoulder pain.  Dry mouth, eyes and skin problems occurred I was then diagnosed with Sjogren’s Syndrome, but not until I’d been to the dental hospital, eye clinic and lastly dermatology.

In the middle of all this Fibro/Chronic Pain was mentioned and due to sleep problems I experience Chronic Fatigue.

Lastly, I have one condition that is not associated with Fibro but for some reason is assumed to be connected and that is Lymphoedema.   Classically with this condition you are not meant to experience pain and yet in my left hand/arm/shoulder where the swelling is I have pain.  The clinic separated this and said that they couldn’t be connected.  So I am no further forward in understanding where this has come from, why it’s around and what I can do about it.  I initially tried some lymphoedema sleeves and although they brought down the swelling I couldn’t continue to wear them because of the pain.

At the moment with the heat, I go to bed with a cool pack from the freezer which I lie my left arm on, as the hotter it gets the more uncomfortable it feels. I paid £40 to have my rings resized, but at least I can now where them again.  I’d been wearing them on my necklace for a while.

So, Fibro, I know you don’t like to be on your own, but I do wish you’d sometimes leave me alone!   Wishful thinking.

Night x