A lost summer

It all started on the 19th June, while at a Hollywood Vampires concert in Glasgow.  During the second last song, Johnny Depp singing no less, I had a piercing headache.  It would go soon, everyone gets headaches and it wasn’t going to spoil my night. However, spoil my night it did, and way beyond. 

My partner told me it was a bad idea to keep our travel plans for the following day.  I didn’t look at all well. Well?  I have fibromyalgia, I never look or feel well, so any additional pain is no more than an addendum.  The headache would lift and my camera would be miffed at missing out on the lighthouse.

Music is important in my life, not that I play, but I need to hear music, it lifts the spirit.  With this in mind I had created a play list to last the full journey.   The music went on, I turned it off, my head pounded.  Thankfully I was not driving, it was a long three and a half hour journey

No, I’m not going to bore you with the details of how difficult it was to smile while there or how heavy my camera felt, stopping me from getting decent pictures.  However, this blog is about shingles in the eye so I will bore you with the pain I had in my right eye by then.  I was sure a sty was brewing.  Just what I needed.

I was glad to be heading home the following morning.  Not only did I have a sty in my eye but a fever blister had appeared on my lip.  I was so tired, but it was Friday and so I had the whole weekend to sleep and recover.  The trip was a wash-out.

The temperature rose.  It was hot.  It was hot for the UK, then it got hotter, by the time we got back to Scotland it was hot for Spain.  I was tired, so tired I poured out of the car and into my bed.  There I stayed until Sunday.  I awoke on the Sunday morning to a circus of blisters over the right side of my face.  My head was on fire.  The temperature rose a bit more.

A call to NHS 24 had them concerned, shingles, they thought.  They arranged an urgent appointment at the local hospital.   Who then sent me on the 40 minute journey to the Edinburgh specialists.  The temperature got hotter.  I passed out, briefly.  The diagnosis was ophthalmic herpes zoster, like you, I cringed.  I felt dirty, if, indeed, I felt anything at all, then I got it in laymans terms.  Shingles, in my eye!  They didn’t care about my face, they were worried I might lose my eye. I worried I might frighten children!

Shingle – ophthalmic herpes zoster

Now, those of you who are fortunate enough to be relatively healthy would probably take my shingles and dispose of them in a couple of weeks, maximum.  Not so easy for those with Fibromyalgia.  I like to think I am a fighter.  I have fought fibromyalgia for eight years and won every single battle, being able to continue working, having no more than a few days off that would directly relate to the condition.  This, however, this was worse than anything I ever experienced.

It is said that Shingles will cause a fever – I had one.  It is said that Shingles will cause fatigue, well hell yes, of course!  Come on in and party with the CFS that has been dancing around in my body, why don’t you?  Here, take a cup of pain.  Oh, you brought your own?  How very considerate.

Perhaps, in the end, I was lucky to have fibromyalgia at the time I was hit with the full Shingles virus.  Lucky in as much as the lethargy I fought in my daily life joined hand in hand with this new fatigue and knocked me on my back for over a month.  I remember very little about that time, other than that it was hot.  It was summer.  It was hot and I wanted so much to get out there and enjoy the best summer we have had in years.  I slept.

There is a condition that shingles leaves behind where it damages the nerves it has played with, this condition leaves the pain behind long after the blisters have moved on and is known as postherpetic neuralgia, this pain may always be with me.

The pain may be blinding but sleep is frequent and dreams, oh the dreams of the memories I have built, those will never fade.  Life goes on, we learn to live with that which we never expected we could face.  We are human. Life goes on.

Floatation Heaven

Floatation tank

The first time I approached the floatation tank I couldn’t get the images of William Hurt out of my head.  The movie Altered States from 1980 was one of my favourites at the time and the crazy idea that you could be changed, reverted back to a cave man, fascinated me.  I’ve never been the luckiest person alive, so I had visions of being reverted back to the days of Dickens.  In a way I was right.  Here I sit, eight years on, and my country has been reverted.  But that’s another story for another blog.

So I was, faced with a coffin filled with salt water, and a “therapist” telling me that I had some choices.  I could have music, or silence, I could close the lid if I wished, there was a light I could keep on, but here was a button to press if I wanted it off.  Most importantly, she told me, there is a button here to call me if you need help.  I will speak to you through the intercom when your half hour is up.  You may lock the door for extra security and a bathing suit is entirely optional.  I was to make sure I had a shower when I was done as the salt could dry my skin.

She left.  It was time.  I have to be honest, I was so excited about this I could burst.  How was I supposed to relax when I was excited about the idea of such total relaxation?  In I went.  There was a pillow for the head and the water was only around 8 inches deep.  It was warm, not hot, warm, comforting warm. I had opted for soft music but it never materialised.  I closed the lid, drip, drip, drip, it was raining inside, just enough to offer a gentle sound of water on water.  I put the light off, my heart pounded.  This was going to be great!  Drip, drip, drip.  Was I over excited?  Would relaxation ever come?

I was floating.  Drip, drip, drip the sound soothed, I don’t think it was meant to, the sound was condensation.  I was floating.

In the distance I heard a sound, like an angel calling my name.  I was floating.  There was light, a gentle breeze, surely this was heaven.  This was certainly a place where pain did not exist.  Floating.  Gentle breeze.  Angel.  Light.

Light?  Had I gone too deep?  Was this dangerous?  “You were really far away there,” the therapist said, in her angelic voice, “it’s almost a shame to bring you back, but time’s up.  Sorry about the intercom, it’s just not working today.”

Three days later I was still floating, still pain free.  What’s more, my brain was no longer foggy.  Could this be the answer to fibromyalgia?

It took over a week for the pain to return to it’s normal level of 7 out of 10.  It returned gently, something to be glad of.

If I could I would have this treatment every week.  I know my life would be so much better for it.   Sadly, I don’t have £45 a week to spare.  For me this is an amazing treatment that works but that I can only afford on very rare occasions.

Maybe it can help you, here’s a link to the one that I use.  https://edinburghfloatarium.co.uk/

Thanks for the Christmas gift

In 2008 I was diagnosed with temporal artritis.  All of the tests came back positive, every blood test confirmed that my ESR level was dangerously high and CPR levels were not acceptable.  The headache I was experiencing was close to unbearable.  My GP acted quickly, the treatment for this condition is a huge amount of predisinol , this is used to prevent loss of sight.  My doctor acted with my health in mind.  The next step was to send me to a neurologist for confirmation.

The neurologist was not amused that my doctor had begun treatment with such haste and insisted that the only real way to diagnose this was with a biopsy.  Steroids, he insisted, would mask the outcome of the biopsy and he would get a result of no temporal artritis present even if I did have this condition.  He ordered the biopsy anyway.  I was in too much pain at the time to protest.  The pain was no longer just my head but my body hurt as it expanded.  Was it steroids or helium they had given me?  I certainly looked like I had been pumped full of helium.

When the results of the biopsy came back negative it was no surprise to any of us.  However, the attitude of the neurologist disrespecting my GP while he spoke to me on the phone was a very big surprise.   This woman had possibly saved my sight and all he could do was complain that she over stepped the mark.  This was the point when I lost it and told him he had a God complex and that for a pompous old git he really needed to grow up.  This was the point where he washed his hands of me and passed my case over to a real neurologist.

The real neurologist diagnosed me with fibromyalgia, it was 23rd December, 2009.  I didn’t know whether to laugh or cry. Someone believed my pain, but it was never going away again.

Was it the steroids that caused the fibromyalgia?  We will never know, certainly the pain from that skin growth has never left me.  At the time I had one or two people suggesting that I should sue the NHS and my GP for negligence.  I have fibromyalgia, that is never going away, I also have a really good doctor who cares enough for her patients to go that step further.  Why in the name of God would I want to deprive another patient of such amazing care?  Not a day goes by that the pain I am in does not remind me of the woman who stepped forward to save my eyesight and each day my mind sends her hugs of gratitude.

Do you remember?

Not everyone believes in Fibro Fog.  Some people get really cross when you find yourself unable to get a word out or if you forget something.  For this reason I find myself often playing memory games online, such as Mah-jong or those found on Memozor.com.

As far as I am able to see there is little wrong with my ability to remember, my concentration, on the other hand, is truly abysmal.  For someone who has spent most of her adult life in jobs where high levels of concentration are necessary I can tell you it is frightening.

Is this a surprise?  No, definitely not.  Consider the life of anyone suffering from chronic fatigue or pain.  The lifestyle becomes sedater, we probably do a lot of sitting, inside houses, getting little fresh air and not breathing properly because our diaphragms are crumpled in a seat. 

We sit, staring at our lives, screaming “get up and move!” but it rarely happens, our active minds are trapped inside an over-protective body whose only intent is to prevent us from further damaging it.  No matter how many times we persuade it that it could be killing us, that backside is not moving, and so, with little more to do, the brain kicks back and puts its feet up.  Each time we try nudge it, it turns up the volume of the music sent by the body, a symphony written with the intent to lull the memory into a soft warm place.  From time to time a spark lights up the soft warm place and the memory jumps to attention, calls on the near dormant concentration and spits out its information then goes back to sleep, leaving us to believe there is hope still.

Do I have alzheimer’s? No.  Do I have dementia?  No.  I have Fibro Fog.  There is hope, there must be hope.  Let’s all open the windows, pull our shoulders back and breath deeply.  Let’s give that brain a shake and get the fog to lift!  There must be hope.

The end of the tunnel

I do believe I have reached the end of that tunnel, the one where the light used to shine so brightly.  I do believe that that light was, indeed, a mirage.

Here I stand, or lean is, perhaps, a more accurate description, given that to stand would imply not propping myself up, looking down in an abyss I once perceived to be that tunnel with the light at the end.  The abyss falls right at the end of the Fatigue Highway.   It is sign posted “forced retirement” and, unlike other retirement signposts, the ones with the cruise ships and fun holidays, the logo depicts an oversized potato sitting on a couch looking at a broken TV.

This is not the end I had hoped for myself.  All of my life I have made damned sure that I was able to earn enough money to keep my family, enough to leave food in the forest for the wolves so that they had no business approaching my door.  Even a diagnosis of Chronic Fatigue served only to inspire me to fight, to keep on feeding my nest egg.  It was, after all, only 14 years until retirement, 14 years until a full pension, 14 years until the mortgage was paid in full, 14 years and I could retire feeling safe from the wolves.

So here we are, four and a half years from that celebratory day and I am staring down the abyss, I have searched every millimetre of the blackness and cannot see even a pinprick of light, the abyss holds no hope.  The day is fast approaching when the blackness will escape, the day when my employer tells me they can no longer sustain my employment.   The day when my pension fund is put in the deep freeze.  The day when my mortgage repayments can no longer be met.  When the abyss escapes, it will bring with it the poverty I have fought against all of my life.  The poverty I no longer have the energy to fight.

Here at the end of the tunnel pain and fatigue dance, the battle is over, they have won.

The end of the tunnel

I do believe I have reached the end of that tunnel, the one where the light used to shine so brightly.  I do believe that that light was, indeed, a mirage.

Here I stand, or lean is, perhaps, a more accurate description, given that to stand would imply not propping myself up, looking down in an abyss I once perceived to be that tunnel with the light at the end.  The abyss falls right at the end of the Fatigue Highway.   It is sign posted “forced retirement” and, unlike other retirement signposts, the ones with the cruise ships and fun holidays, the logo depicts an oversized potato sitting on a couch looking at a broken TV.

This is not the end I had hoped for myself.  All of my life I have made damned sure that I was able to earn enough money to keep my family, enough to leave food in the forest for the wolves so that they had no business approaching my door.  Even a diagnosis of Chronic Fatigue served only to inspire me to fight, to keep on feeding my nest egg.  It was, after all, only 14 years until retirement, 14 years until a full pension, 14 years until the mortgage was paid in full, 14 years and I could retire feeling safe from the wolves.

So here we are, four and a half years from that celebratory day and I am staring down the abyss, I have searched every millimetre of the blackness and cannot see even a pinprick of light, the abyss holds no hope.  The day is fast approaching when the blackness will escape, the day when my employer tells me they can no longer sustain my employment.   The day when my pension fund is put in the deep freeze.  The day when my mortgage repayments can no longer be met.  When the abyss escapes, it will bring with it the poverty I have fought against all of my life.  The poverty I no longer have the energy to fight.

Here at the end of the tunnel pain and fatigue dance, the battle is over, they have won.

Missing

The tough thing is being reminded of all that you have lost.  Today a couple of things happened.  First, because I had been so frumpily down and bedraggled lately, I decided to put a little bit of make up on and wear my high heel boots.  This, I knew, would cheer me up.

So, after the struggle to keep my arms up and hold my electric toothbrush in place, I had a cup of coffee before tackling the ordeal of some eyeliner and lipstick.    Eyeliner, and rest.   Plug in hair straightness and put some lipstick on, and rest.  Raise straightness to my head, wish I had a forklift for them, they are so heavy.   Burn my scalp, and rest.   Turn heat down on straightness, have another cup of coffee.  Pick up straightness again, finish my hair, it’s just a few strands in the fringe, I can do this, and rest.

Now for the boots.  Last year, after having the trots for six weeks and lost nearly a stone, I invested in the most beautiful boots ever.   Look at them!  They are pure class!  The fit was perfect, which was a relief, having had them shipped all the way from China.  Today, however, I failed to consider the steroid consequences from the weekend.  My feet are still swollen.  Yes, I squeezed into them, but boy were they tight.   The added inch and a half, however, did serve to boost my self esteem, until I got to the shops and realised I had to walk in them.  Tonight my legs ache more than they did this morning.

In the mean time, a well wishing friend sent me a text to find out how I am doing.  Am I still able to paint?  Am I still able to walk?  Do yoga perhaps?  All these things seem like such a distant memory.  There was a time, around the end of September, for about a week or so, when I was able to get my easel out and paint a couple of pictures but, sadly, not since.  The closest joy I now get from my art is sitting coaching my grandson on techniques, and even those days are very few and far between.  Walking?  When was the last time I walked?  I mean walked, sure, I walk around the house or the supermarket, but I used to love walking in nature.  And there’s yoga.  One of my very first loves.  My “go to place” when I am down.  I know all of the theories; I know all of the tricks to making yoga work for you, the gentle movement, making sure you don’t overdo it, making sure you don’t give it up.  Right now I just don’t have the energy to even try a simple forward bend or even a childs pose.

So, this simple text got me thinking.  Way back in 2009 when I was first diagnosed I started the facebook page fibromyalgia blog with the intention of charting my progress back to health.  I had so many tools at my disposal.  I had recently achieved a BSc in holistic therapies so I had Reiki and hypnotherapy that I could do for myself.  I could create guided meditations to help myself relax.  Yes, I was well up for the challenge and I fought back.  Year after year I fought back.  In these years I was only off with fibromyalgia three times and each time was a short period, a few days of rest and I would start again with the Reiki, hypnotherapy, yoga and some walking.

Now it is all gone.  The Reiki no longer flows from my hands as it used to, it takes concentration to perform self hypnosis or guided meditations and without energy it is impossible to walk farther than the coffee pot never mind do a forward bend to touch the floor.

It is when you are reminded of all those things that seem so far away, all the treasures that life once held that have gone, the things you once took for granted that you now realise were the essence of your self.  It is on days like this that you can feel that spiral begin to drag you down into the abyss of despair.  It is on days like this that you know you need a miracle.  I used to believe in miracles, hell,  I have a Reiki Master Certificate in 6 different disciplines of that very spiritual path in life, of course I believed in miracles.  The question is, can I find my way back to believing?

Then, as I finished the last word of this blog, that last word being “believing”, I do believe I found my miracle. I am writing. Possibly not very well, but I am writing. I am only able to write for around 15 minutes a day, but I writing. I do believe this may actually be the conduit to stop that spiral sucking me in. I hope you too find your miracle.

Nine months of hell

As with any hidden illness people with Fibromyalgia will be bombarded with “but you look ok”, or “you’ll get better”.  I am not sure if it’s because it’s not a terminal illness that people don’t take it seriously.  As my doctor explained to me, “you will die with it, not of it”.    That’s true, as long as you keep on top of that depression…

What gets me is that after all the research, after all these years, you still, occasionally, come across a doctor who does not believe these conditions exist.  Fortunately I have never met one in my medical practice, each of them are amazing and truly understanding of the condition.  That is not so with the “independent” medical doctors used by my employers.

In the years since my diagnosis I have met just one OH doctor who not only acknowledged the condition, but praised my efforts at staying in employment in the last 8 years.  He acknowledged that I was trying really hard not to give in, and, in light of my employer at that time requesting medical retirement for me, agreed with me that I could continue to fight and carry on.

Just a year after that I was sent to the hospital with a suspected stroke.  Despite my complaints that it was nothing more than a trapped never I was subjected to a battery of examinations, including an MRI which picked up “something” but was not conclusive.  Had they looked closer they would probably have see it was an IOU from God. 

In between these tests I was hit with ophthalmic herpes zoster (shingles of the eye to you and me).  I was in bed right through the most amazing summer Scotland has experienced in decades.  I tell you, the day I was conceived I was probably in the lavvy or playing Mah-jong when my name was called by the luck angel, that’ll be why I got the scrapings.  If you are reading this and you have fibromyalgia, you were probably playing with me. 

So, having shingles in the eye is not the most pleasant experience.  Fortunately the virus made me delirious and I don’t remember too much of it.  I do, however, remember looking in the mirror and feeling sick at the sight of blisters actually in the white of my eye as well as all down the right side of my face.

Thus began the mother of all fibro flare ups.  As the months passed and the shingles receded, the pain did not, neither did my need for sleep.  I was sleeping around 14 hours a day.   Finally, it felt like I might be on the road to recovery when BAM! I was hit with a diarrhea bug.  Man alive, no sleep for me here, every half hour I was up. 

After six weeks of the diarrhea bug I decided to see the doctor, who very quickly sent me for a colonoscopy.  This was my Christmas present from the NHS, 24th December, here, have a camera up your ass.  Lucky for the camera crew there’s plenty of room up there, I’d have hated for them to stuck.

Morbid curiosity led me to the internet so that I could see what a normal large intestine looks like and what an abnormal one looks like.  While they were poking around and I was watching on cameral my diagnosis was that I had the most beautiful colon ever.  It is a lovely, rosy colon with no cancerous bumps and no polyps.  Still they took a biopsy.

Fast forward to the end of January, diarrhea continuing and fibro flare up after flare up hitting me, I received a phone call from the doctors office asking me to collect a prescription that the hospital had asked them to supply.  Well now, I wasn’t going to take just anything and I hadn’t been told by any doctor, hospital or otherwise, that I needed anything more than the 15 pills a day that I am taking.  So they got a wee boy to call me and tell me that they are putting me on steroids (again! See my blog on my diagnosis).  I am pretty sure this kid must have wanted his mummy after I was finished with him.  Not his fault, I know, however, I had already spoken with the pup a week or two earlier and discussed the issues I had with steroids before.

“No, these are different”, he protested, “they only affect the gut and you won’t get any of the other side affects”.   He made a convincing case that the hospital had prescribed these because the biopsy had found that I had lymphocytic colitis and this would quieten the diarrhea.  Well, clearly that shit had to be stopped.

So I tried them out.  24 hours later I looked like someone had pumped air under the skin of my face.  My eyes were nowhere to be seen.  My nose poked out between my cheeks, gasping for air.  Princess Fiona had arrived.

Needless to say I took no more of the steroids and I am in another godforsaken flare up. 

To make my days even happier, I received a report from Occupational Health, the same doctor I have seen twice already, who emphatically does not acknowledge fibromyalgia, has assessed the report from my doctor saying that she is not hopeful that I will be able to return to work, and said “bullshit” this will pass.    Now, to add to my current flare up I have some added stress, which will add to the pain and sleeplessness.  But it’s ok, I will get better, the so called “independent medical adviser” to my employers has deemed it so.  She has been saying this for over six months and still it has not happened!

Costochondritis

Here’s one the doctors won’t normally pick up on.  Twice I have been sent along to A&E with symptoms of a heart attack, twice they have found nothing.  Twice they have done all of the tests and twice they have found nothing.  No, I have not been diagnosed with Costochonritis, perhaps if I did alert people to the symptoms every time it happens I might be, but I won’t.

For me, there has to come a time when you no longer run to the doctor with something you know full well they can’t fix, not even temporarily.

Those of you who have Fibromyalgia and have not yet experienced this, take note of the name, here’s a link to the NHS Costochondritis site, if heart attack tests come back negative, ask your doctor if you might be experiencing this.  It won’t stop them sending you to the hospital with each attack, but it will help the doctors to understand why you keep coming back with these symptoms.

A Journey to Hell

When first diagnosed with any of the Chronic Fatigue type conditions you can be forgiven for thinking your life is over. Technically, it’s only life as you knew it that is over. We are humans. We adjust, we adapt, we conquor!

Yes, I agree that being told that you are in Chronic Pain and unable to focus and that there’s bugger all they can do to help you is going to make your heart sink. When they tell you that there will be days when you can’t get out of bed, and sometimes weeks where it is too painful to shower, you cringe and wonder wouldn’t it be better just to die now. The answer to that is a very clear NO!

There is life to be had living with chronic fatigue, it’s not an easy life, but you probably wouldn’t have chronic fatigue in the first place if you had a charmed life before it, so already you are a fighter, you can and will overcome and adapt. This condition will not kill you, so you have two choices, lay in bed all day for the rest of your life crying about what life sent you or figure out a way to stand up, and I mean this quite literally because there will be days when you can’t figure out how you were ever able to stand on them legs, and live a new life.

I was diagnosed with Fibromyalgia / CFS in 2009 and since then I have been to a variety of pain clinics. Luckily I had recently got a BSc in Holistic Therapies before my diagnosis so I also had a few tools in my bos that I could put to good use. In this blog it is my intention to share with you my journey, my thoughts on what works best and my thoughts on what does not work at all. Please remember that these are only my experiences. CFS is not the same for everyone. Like all other members of the human race, we are all different and, with that, our bodies will react in their own way to anything we try.

The Chronic Fatigue conditions are not the end of your life, they are the beginning of a new life.

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