“We need to talk -“

These are words that always spell trouble for us.  It is often the beginning of the end of a relationship, or it could be the beginning of the end of a job.  In my case it often means I have had a call from my son’s school and it is NOT good news.

I feel like in this case, I just need to let you know where I am and how I have been doing.  I hope that this will not be the end of our relationship, but perhaps move it to a different level. 

My arthritis has been horrible, and so it has been hard to sit and type anything, and I simply had to stop. My son was off sick and quarantined for 3 weeks right at the start of the school year, and although he is now back I got some of what he had.  It took three weeks for a GP to be willing to see me and let me know that I was actually dealing with bronchitis.  I took my antibiotics and my inhaler as instructed and my lungs still feel like there is soup filling them up.  Okay, I know that’s gross, but there it is.

I have had to take a break from almost all things social media, simply because it was becoming too taxing and stressful to think of things to share.  I felt as though I would let you all down because I just wasn’t feeling positive or upbeat or seeing the funny side of things.  It was then that I realized that I felt like crap and I was in pain, but I wasn’t doing anyone any good by pretending I was OK – least of all me.

My back has been in agony since last week.  Last Monday evening I had left my younger son to work on some of his homework for his GCSE Food Tech, while I came in to the lounge to sit down.  I had finished the antibiotics 4 days earlier and was starting to feel a bit better, and then all of a sudden I felt unbelievably cold – like I was locked in a walk-in freezer.  I sat down and in spite of my fuzzy socks and slippers and my long robe over my pajamas I needed two fleece blankets over my legs and my younger son put his duvet over me.  I just felt colder and colder – I didn’t just get the chills, I was having convulsions.  I couldn’t control my legs at all, so you can imagine how much strain that put on my lower back and tailbone and my groin. 

 

My son told me my lips were blue and when the paramedics came to check on me, my temperature was 100F – out of nowhere!  My fever broke the next day and I spent it mostly sleeping, but I still don’t know why.  I know that while this exact situation may not have happened to any of you, it could.  Unfortunately, just because we have Fibromyalgia or Chronic Pain we are not exempt from getting colds and flues and other infections.

Actually, I suspect that most of us have compromised immune systems BECAUSE we have these conditions.  I guess I just wanted to say to try to keep healthy, but when you can’t, you don’t have to be a hero.  I know it seems like a silly thing to say – and I am NOT trying to be condescending in any way – but I never really understood that until I was curled up in bed trying to get over a sneak attack fever.

Thanks for hanging in there you guys, I really appreciate the support.

 

 

 

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Fibromyalgia and Finding Balance

Hello my lovelies!  Thanks for all of your wonderful support.

I just wanted to let you know that for medical reasons I have to take a hiatus from the blog.

I hope to recharge and get back to it soon.

Thank you all of my fellow spoonies and Fibro Warriors.

 

 

Fibromyalgia – Feeling “Bestless”

Hello my lovelies!  It has been a while, but I’m still here!

Phew!  I have spent the last few days feeling completely “B-estless” – you know, Bored & Restless.

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Anyone else feel this way?  You know, how your brain keeps spinning around like a hamster on a wheel, going nowhere?  Okay, that didn’t really make a whole lot of sense, but it also goes to support my statement – I have been feeling Bored and Restless. For those of you who are also housebound, you will understand I’m sure.  Of course, you might be feeling this way even if you aren’t housebound, simply because your mobility has been affected in some way because of this condition.

In other words, feeling “B-estless” can happen to ANY of us.

There are only so many movies and TV series you can binge-watch on Netflix.  There are only so many books you can read  – either as physical books OR from your Kindle or other eReader.  After a while, the movies and books all start to blur together as one big chaotic improv performance that you don’t fully remember and therefore you don’t fully understand.

I found myself feeling so b-estless that I actually thought that I wanted to get up and dance around the kitchen while making dinner!  When I went to stand up to get a drink of water, the feeling passed just as quickly – thank goodness!!!

dancing

When I feel B-estless, it’s like I’m on edge, ready to pounce into action.  This was all in my head, but it was like I was a super hero in disguise, waiting to save the day.  Okay, I know that I couldn’t, but in my head I was AWESOME!  It was like my body was in Cortisol production over-drive while I was running on stress, for no particular reason.

wonder twins

Yesterday I found myself trapped in a moment of indecision.  I couldn’t decide if I should read from my Kindle, put on music or watch the next episode of “From Dusk to Dawn – the Series”.  My brain was trying to get me to do everything all at once and it was the most bizarre feeling I have ever experienced.  I literally sat on the sofa with Netflix paused, my playlist ready on my phone and my Kindle all ready to go, and I just sat there and stared at each item.  This moment of hyper paralysis lasted almost 5 minutes!  In the end I decided to read a chapter from my book and then when to bed.

Apparently all I needed was to lie down and listen to nature sounds in the background.

I thought I had escaped the virus that my son has been fighting for the past 3 weeks, but today I have been coughing and my throat is now raw & sore.  Perhaps, if I’m a bit lucky, I might get to listen to calming nature sounds and sleep some more.

spongebob

Nothing makes feeling B-estless worse, than being sick so I hope this virus only pays a short visit LOL!!!

For everyone feeling B-estless or sick or both – you are in my thoughts and I hope things change for you soon.

Here’s to fighting the good fight, especially when we feel BESTLESS

butterfly

Fibromyalgia -Back to Reality

Hello my lovelies, I hope you didn’t miss me too much. Of course, it will do my little heart good to know that you at least missed me a little bit.

Anyhoo, life is finally back to normal after a busy summer break.

We had a massive 3 week heat wave here in England and no rain between May and mid July. Our back garden looked like a desert. Luckily we got rain again and the grass is green instead of looking like straw.

My mom came to visit for 9 days and was even here to celebrate my birthday at the end of August.

We took her to London for a day and a night AND stayed at a Crowne Plaza hotel. We did a Hop on hop off bus tour and a boat ride along the Thames.

My husband and I took our kids to Bristol for a couple of nights at the end of July.

I hope all of you enjoyed the summer as possible even if you didn’t go anywhere.

It was a bit of a challenge because we did all of these things with me in my wheelchair. Someone had to push me around if I wanted to do anything.

Both of my teenagers are back at school now so I am back to the reality of being home all day. The other day I suddenly got pain shooting up my back. I don’t know what from. It was so bad that I was weeping. My poor husband and kids rushed to try to help ease the pain with massages and an extra dose of pain killers. This made me realize how much pain I just push through every day. In fact, how much pain we ALL push through every day.

Now that the holidays are over I have been shoved back into my reality. I would imagine that I’m not alone. Feel free to contact me if you ever want to chat about OUR realty of living with Fibromyalgia and chronic pain.

Here’s to all of the Fibro Warriors!

Let’s keep fighting the good fight!!

My fibro-friendly designs for Fibro Warriors – please check out my board on Pinterest!

Hello my lovelies,

I hope you are all doing okay. I have been busy with my new side project. I have been trying to find a way to raise more awareness of this mysterious condition and to find clothing that is comfortable. I didn’t want to have just one tee shirt that I might wear, but one that lots of people would want to wear. There are shirts made for Breast cancer or other csncer awareness. There are shirts made up for Lupus, Dementia and Arthritis Awareness. There are whole kits made for people to have their own Macmillan cancer support coffee day. There are lots of others too. I wanted to design a range that could raise awareness of Fibromyalgia, but with humour.

In my experience, the tee-shirts that were provided for charity runs or coffee days were always thin, itchy and not something you would wear after the event.

So I decided to design my own collection. The clothes are guaranteed to be soft with a good thickness to the material. You don’t have to make any minimum orders.

I hope that you will take a look at what I have so far and let me know you think.

I am going to be honest here and say that I would LOVE if you bought something that I designed, BUT you are still my lovelies even if you don’t.

Fibro Warriors let’s fight the good fight.

https://pin.it/v3nnyaghymhavr

Fibromyalgia Pain – “And All That Jazz”

Hello my lovelies!

I really hope that you are all doing as well as possible. If you aren’t, then I hope you make time to take care of yourself. If you read my last post, you will know that on Tuesday last week I had a freak accident – my wheelchair tipped backwards with me in it. I hit the pavement hard and I was told by several helpful strangers that they could hear my head hit the concrete.

ouch

The lump on the back of my head is much smaller now, so I think the worst of it is over – I’m not going to slip into a coma. I almost wish I had, because then I would have at least slept.

dry eyes

My lower back is in even worse pain and there is bruising right over the area where my spinal disc bulged out 4 1/2 years ago. This is when I really wish that I could at least be on morphine or that Medical Cannabis was fully legal for those of us suffering.

no morphine

no mj

When I got home last Tuesday I was so exhausted, but my kids made sure to wake me every couple of hours and they made sure to help me and make me dinner. I couldn’t get any opioids or Medical Cannabis so I tried to find ways to relax. I have to say that the thing that helped me to relax the most was listening to Jazz.

jazz

Seriously, Jazz. I have ALWAYS loved Big Band music and Swing Jazz. It is probably because my parents loved it and often had it playing on their turntable when I was growing up – along with classical music. After my father passed away in September of last year I started to REALLY listed to jazz and classical music a lot more. It was kind of my way of staying connected to him.

I have to point out that I really like other music as well – my husband and I even saw The Cure in Hyde Park on the 7th of July this year.

The Cure in Hyde Park

When it comes to absolutely chilling out, I always go to Jazz first. I have discovered so many flavours of Jazz that I never knew existed! There is Cafe Jazz, Slow Jazz, Romantic Jazz, Jazz & Bossa Nova for an awesome Latin vibe. There is also Electric Swing Jazz – some of the classic standards, but done up like electronica dance music. It’s hard to explain, but trust me it’s cool. I love Billy Holiday, Louis Armstrong, Glenn Miller, Benny Goodman, Ella Fitzgerald, Dinah Washington, Lena Horne, Norah Jones, Etta James, Julie London, Helen Merrill, Rosemary Clooney, Nat King Cole, Bing Crosby, Aretha Franklin and Diana Krall – just to name a few.

swing

dancing

bossa nova

brazil

When I hear some great Jazz music – whether it is instrumentals only or with vocals – I feel better emotionally.

The pain doesn’t magically stop, but I feel a sense of peace. Who knows? You might feel the same thing?

Let’s continue to fight the good fight my Fibro Warriors,

butterfly