Gratitude for the little things.

Gratitude for the little things.

I’ve been trying to look for the small things that make my day good and celebrate them. Like getting up and dressed. Don’t take it for granted as for some of us with a chronic illness on some days it just isn’t possible. It helps the day improve. We have to begin somewhere and since trying to treat the Lyme Disease which seems to have taken me over and whatever else might be going on. I might have to grab at straws from time to time.
Yesterday I had an appointment on “Fantasy Island” as our friend refers to it.
I have been looking forward to it for a couple of weeks and was trying to rest the day before so that it would not be ruined by my illness, so many things have to be rebooked or cancelled at short notice but I was determined I was going.

Things to be grateful for:

I had slept really well and got ready in plenty of time. Although I was a little nervous of the day and my stomach was letting me know it wasn’t happy. IBS always kicks in when I’m anxious or excited.

I go ready to go though and bizarrely what made me truly grateful is that I was able to put my usual moisturiser on for the first time in a fortnight without it feeling as though I had put acid on my face. I had a reaction to the medication which made me not just sensitive to sun but also normal daylight and I got caught in the sun 2 weeks ago. The result was burned face neck hands and feet which are still red and sore and peeled. I have had to coat myself in Aloe Vera several times per day use aqueous cream and using water on the skin has been very painful and makes it flare up. Bathing has been a joy (not) and my partner has been washing up since.
Most of the burned skin has now started to renew with all the help I’ve been giving it and I was just so grateful that it didn’t hurt when I got ready to go out yesterday.

I was well enough to drive myself and this was huge for me. Yay! Hope was ready and waiting and I haven’t been able to drive myself anywhere for almost three weeks I had missed my independence and it was a joy to get back out there and behind the wheel.

The sun was shining, it always makes things better. Despite the fact that I had the roof up was covered up and wearing factor 50 sunscreen.

I saw nice people both for a meeting and also afterwards when I met our friend with a coffee and cake.

It was another chance to view the wonderful scenery and wildlife in a beautiful location and I should never miss that.

My brain allowed me to function quite well. I was able to ask questions I wanted to know without rambling so the brain fog was not immediately apparent and I remembered the replies.

My heroes welcome from the dog because he’d missed me. I haven’t been out without him in almost a fortnight.

Although I came back exhausted I felt like I had achieved something for the first time in a while.
It’s the little things you know… they mean so much.

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Tock Tick, 

Tick tock, tick tock

Incessant noise from the clock

Tock tick, tock tick
All the while that I am sick.

It carries on doesn’t want to stop

When I am ready just to drop.

Reminds me that time marches on

While they figure out what is wrong.

All the while as I lay in my bed

The noise I hear going through my head 

Layers upon layer it’s there underneath,

Hear it so loud I clench my teeth.

While there is pain my body quakes,

Blood pumping fast I have the shakes.

Ever changing from the norm,

My life has taken on new form.

So different now from before,

Not knowing what it has in store.

On most days I live in pain,

Thankful for some small gain.

The gratitude when things go right,

When I can sleep through the night.

When I can feel I do not shirk,

And I’m able to do some work.

See my way through the brain fog,

To enable me to walk the dog.

Walk up the road from side to side,

Stagger along with him at my side.

Is she alright or is she drunk?

Wish I could escape from this funk.

Erratic emotions cause alarm,

Losing all my grace and charm.

Will they notice my thoughts are mussed,

Or disregard they are not fussed.

People have fallen by the way,

As I fight through each day.

Some are still there as they should,

They are the ones who are kind and good.

Yes life has changed beyond recognition,

Going forward, time out, this intermission.

For this is not how it will stay for me,

I’m sure it’s only temporary.

Over time I’ll start to get better,

Once again be that go-getter.

I hope that it’s not permanent,

For this is not how my life’s meant.

The New Me?

The new me…

If I can make it through a 12 hour day without crawling back to bed in pain. I am feeling lucky.

Where I haven’t fallen over, scalded myself, dropped something, hurt myself or stepped on the dog then it is an achievement.

Where when I wake up and look at my phone I can see clearly without the blurred vision and the floaters that cloud my eyes. The headaches which are becoming ever more frequent and lasting longer. Sitting around with a clenched jaw because most noise is too loud. The watch which is no longer worn because the ticking keeps me awake and gives me a headache. The hum of appliances as I walk past them make me feel queasy. A passing odour which can linger for hours, bring on a headache or turn the stomach. An onslaught to my heightened senses.

Where I’ve held a conversation which has made sense and all the words have arrived in their correct sequence to impart whatever I wanted so desperately to say. Without the tears of frustration escaping and emotions running high.

A day where I’ve been able to take a shower and get dressed, because I didn’t fall over in it. Or if I feel really good I don’t resort to using the shower seat and can co-ordinate my limbs without them hurting and shaking and having to sit down part way through.

I don’t wear make up very often, there seems little point I rarely go out at the moment. One essential shopping trip per week usually accompanied since I am often too ill to drive myself.

On a good day when I make food I don’t split the packets on the food I try to prepare sending the contents skidding across the worktop or worse the floor. I am able to make a cup of coffee without dropping the jar and I can even drink it without throwing it all over my clothes.

Sometimes I can manage the weight of the laundry awaiting try to hang it out on the line. Some days I can even walk the dog, who trots along patiently at this new slower pace, nuzzling me to reassure. I can put on shoes, with socks only for an hour because my feet feel as though I am walking over hot stones. My boots are without laces, because I am unable to tie them. They come off the minute I get home so that I can cool them down again, the slightest exertion and my hands are the same. Washing up water hurts and they throb for hours afterwards.

Other days I cannot do these things. I slink back to bed, try to sleep, willing the pain to go, the tremors to stop and my thoughts to make sense to me. I hope that the painkillers work, that things will change for the better. I hope that I don’t choke when my throat goes into spasm and wakes me coughing loudly anything around my neck feels tight, from the inside out.

I have a sense of humour, I guess watching from the outside it might be funny to see some of these things as they happen if this weren’t the new me.

It is not the me that I want to be, or thought that I would be. 

I am hoping that this is the temporary me, one that will improve soon to be replaced with a faster, streamlined and efficient model in the same skin, only skin that doesn’t itch and crawl.

A new me that is not cheated from the plans I have made for the future and the life I want to lead one who has the energy to go out and get it and be me.

Do you know what it is yet?

Well yes and no. As some of you may have been reading my posts for a while now already know. I haven’t been well for a while.
It’s why posts have been sporadic for the past couple of months at least. I aim to do a little better since for my own peace of mind I have to still be able to do something.

I suffer with Endometriosis, hypertension, depression and have over the past couple of years been through quite a lot. At times it has really got me down and I haven’t always known which way is up. 

I am trying. Trying to get through whatever this is but knowing your body and how it behaves is a two edged sword. I have had Endometriosis, a chronic condition since I was seventeen years old but back then I didn’t know. I waited and went through a living hell that only those with a chronic condition will understand for another 18 years before it was finally confirmed.
8 years ago, I had a hysterectomy and thought that finally my life could begin. I’d been given a new lease of life. I was cured! 
Well actually no, I wasn’t. Although my health improved significantly for a while, it is an incurable condition aggravated by stress and can present itself in and around other organs causing unimaginable pain.
Fast forward to a few years ago when I started to get awful pain in my bowels and the old familiar dragging pain in my abdomen again. It’s easy to shrug it off thinking that if you don’t have the equipment anymore you shouldn’t have these pains and if you ignore it, it’s sure to go away.

I don’t like taking medicines. I have reacted to so many over the years in the name of testing and some have left with me long lasting effects.

Due to the Endometriosis I also have a high threshold for pain and am stubborn so tend to have an I can get through this mental attitude.

But… Dealing with the pain I have been in over the past few months has been unbearable at times. I can tell you that Painsomnia is a very real thing. 
I have on many occasions over the past few months sat in the GP surgery asking, “What on earth is wrong with me?”

I knew deep down that something was pretty wrong and that I needed to get to the bottom of it all. I have been trying to wrack my brains and put my finger on it, times and dates. I keep a diary to jog my memories I do not always put find details in it. 

Sods law prevails, there are a few missing pieces in my puzzle.

The GP has been understanding, sent me for lots of tests trying to help me find out the root cause. So many symptoms have been unexplained and put down to stress. Life has been unbelievably stressful in the past year alone, but longer than that. But I suspected that there was more to it than that.

I’m not clutching at straws but sometimes you can join up the dots.
My GP suggested that I may have Fibromyalgia brought on by my circumstances. 

It is a condition I had heard of but nothing more I felt I needed to do some research.

That is when I received a lightbulb moment. There are some things which mimic Fibromyalgia symptoms. But suddenly there it was, in black and white in front of me.
The question, Have you been bitten by a tick? You may have Lyme Disease…

Take this online questionnaire and give the answers to your GP.

I did the questionnaire. Almost every answer was yes to what I had been going through lately. Don’t panic I thought. It must be easy to find out surely?

When we were in Scotland it was Springtime. It seems like ages ago. The deer were jumping around the garden, all sorts of wild animals trotting past and came to see us. the cattle were in the field at the back of the house and the grass had just begun to grow for the summer. It went from looking like a lawn to a field in a matter of weeks. Between the sunshine. It rained a lot and grew so fast. There is too much of it for us to mow and too many underground hazards for heavier machinery to get in there. We were walking in pasture on a daily basis and picking ticks of the dog every time he came indoors. Thank for for spot on type treatments to protect him. The drops didn’t stop him getting them but I think it made them drowsy and easier to see. Since the weather was warm outside the dog slept on the bed during the day since it was the only cool place in the house. I felt tired a lot so sat with him on the grass outside in the sunshine.
I picked them off him and disposed of them. But one morning in early May I think it was, I woke up with a massive bite on my back. I didn’t remember being bitten the day before and it definitely wasn’t a midge, could it have been a horsefly I thought. I asked my partner to take a look. It was strange he said. Really red and about the size of a 50p piece and looked like a bullseye. In a couple of days of putting Aloe Vera onto it, the itch died down a bit. I thought no more of it.

I started to feel really tired again and my neck hurt for a few days. Had I slept in a funny position and strained it. I slept without pillows but it didn’t seem to help either way. For no reason and had a colossal headache which lasted for 5 days. All I wanted to do was sleep. I couldn’t get much done, it was a good job that I didn’t have to drive. I just thought that again it was stress. More rest required so I was sleeping roughly ten hours a night and still waking up tired. I felt as though I was getting the flu, I had a temperature for about 48 hours, felt feverish if it didn’t seem to turn into anything.

I thought I had escaped a bug of some sort. 

Within a couple of weeks when I suddenly kept getting excruciating pain in my hands and feet I blamed it on the damp. I couldn’t think of any other reason it could hurt so much. It was like cramp and fire at the same time, burning from the inside out. I rubbed my hands each night and day with hand cream hoping to ease the pain. Had I overdone some gardening he asked? No, I hadn’t actually done anything with them. 

It was frustrating.

I’ve had this pain before. The year before and last year. It wasn’t as bad as this. 

We came back South and saw the doctor who sent me for blood tests checking for arthritis and rheumatism we waited for the results. Full blood work came back with a vitamin D and calcium deficiency but otherwise it was Ok. I already take a supplement daily so started to take two.

In the weeks since then I started to get the shakes, tremors I can sit doing absolutely nothing and feel my whole body shaking. Sometimes you can see them. The fire in my hands and feet has moved to elbows shoulders and knees and ankles. What was happening only sporadically is now a daily occurrence. The pain is constant and I am concerned. I grit my teeth a lot. It stops them chattering uncontrollably my own reaction to shock and pain. My whole body aches. I keep waking up in pain and being really short of breath. Like someone has stolen it away from me unexpectedly as I walk along the road. The dog has become used to my telling him to slow down and wait for me and toddles alongside me. 
About three weeks ago she mentioned the possibility of Fibromyalgia and then I found out about Lyme. There were warnings on Facebook in May, a little info but I thought that we were careful and if we got rid of the ones off the dog we would be alright. You could see them on him, so we would be sure to find them on us too. Or so I thought… I read more, a tick can be the size of a poppy seed. So what hope is there if seeing that and removing it in time. Not all ticks carry Lyme, well I’m grateful for small mercies then.

So what do you do to find out?

There is a type of blood test to check,  it is called ELISA but these are not conclusive depending on what stage it is at. It can take several weeks to present itself. Meanwhile you feel like death warmed up if this is anything to go by. Not everyone gets a bullseye bite either.

My legs keep going numb. The week before last I collapsed for no reason. I went to sit down and my legs went from under me. I was exhausted I had only just got up, had a breakfast and a shower and needed to sit down again my legs were wobbly. This was worrying.

I got an appointment for Monday last week. I sat with my work coach who told me I looked so ill. She told me I wasn’t fit for work and she doubted I could be through the day let alone an interview. I told her I would see the Dr that afternoon. I asked for the test and told the doctor my concerns. He agreed it sounds like you have Lyme Disease we’ll send you for it. You’ll need time to get better, at least six weeks and you need plenty of rest.

My hands are failing me. I couldn’t do my partner’s shoelaces up for him. My hands just wouldn’t work. I couldn’t get the lid off the open coffee jar the other day. I keep dropping things.
There are days when I can’t remember what I wanted to say, mid sentence I am struggling with the end of it. I have pain in my head it is fuzzy. Not all of every day but it is unlike me. I have had spasms in my head, the electric noise comes and goes and a flicker in my eye.

My joints are all clunky just like the middle of a damp winter they feel inflamed and sore.

Last night the numbness in my right leg travelled all the way up it.

The other night I felt that I might be having a stroke. I lay in bed panicking in fear in case I couldn’t move, slowly things did again and I calmed down.

What would happen if I did? How would my partner cope? What would he do with everything in the loft? He can’t even get in the loft!

I went into the loft the other day for a while, I am trying to start thinning out the huge amount of things we have amassed in readiness for a house move. Going through the boxes I started to make a map of the loft so that thing will be able to be found. 

Horrible thoughts and nightmares fill my nights at the moment. It feels like another massive change in my life which is beyond my control. 

Is my fate in the hands of another? 

If I couldn’t walk how would I get around my current home? Would we ever be able to get back to our home in Scotland, fix it up or live there again? What happens if I become incapacitated suddenly? Or worse still had a stroke leaving me unable to speak or write. There is so much in my head I have to find an outlet for it. 

I have read so much about this disease in the past few days and yet barely scratched the surface of it. I have read that if left untreated for any length of time there are things that can be irreversible. There is a threat of seizure, facial paralysis, people are unable to drive.

I must admit that the thought of just any one of these things being temporary let alone permanent scares the wits out of me. At the moment there have only been days when I wouldn’t dream of getting behind the wheel when I can barely stand up. There are other days I have ventured out and have had to Steel my nerves and shakes before getting back in the car, gathering myself and taking pain killers. 

In the past few months I have become much more reliant upon others to help me with things where previously I had been fairly independent. But it worries me that if there is no one available to help, because they have their own lives to lead. What happens if there is no food in the fridge and I can’t get out to get it. Or prescriptions that are needed for either of us. What if we cannot walk our boy anymore.

Just how bad can it get?

There are so many unknowns and I am trying not to let my imagination run wild. I am trying to be strong about it. Not needlessly worry my already very stressed partner who will be having more surgery this month. He asked me the same question last night. I don’t know the answers. We were walking the dog it was the wrong place to talk about it. I began to read some of the things that could happen out to him last week, he asked me to stop. He couldn’t cope with knowing so where does that leave me?

At the moment I do not have the results of the tests, as my partner said yesterday this is like the longest wait ever but we are all pretty sure that is what this illness is. If they confirm this on Wednesday then the meds start and let battle commence.
I was thinking over the weekend, I wonder if this has been going on for much longer than since this May. My work coach said it first on Monday that I had been so ill for a long time now. I burst into tears. It was a shock to hear it. I remember a couple of years ago 2015 when we were in Scotland in August that year. I was bitten by something we thought it was a horsefly then. It was an enlarged bite and I reacted really badly to it, was in. We for a few days as I felt so ill. I can’t remember much else about it except that my partner had to drive me to a chemist in the nearby town for anti histamine tablets and hydrocortisone cream which I used for about a fortnight after. It occurred to me that if this was an infected tick bite back then it could (just could) be the cause of some of the last two years of medical problems. 

I guess I have no way of knowing for sure we will have to take each day as it comes and just deal with whatever it throws us as usual. 
God give us strength.

There didn’t have the results yet I couldn’t wait and asked for antibiotics. I am taking them and feeling still worse. I spent Saturday in bed and I haven’t left the house for two days. I have joined a Lyme discussion group on Facebook to try and find ways to ease the symptoms. So far this illness is scaring me, I am trying daily to rise above my fear.

3 Quotes in 3 Days Challenge -Day 2

Well. With such a huge choice at my fingertips I was torn as to which one to choose for today. I don’t know if like me you have a folder full of quotes to lift your spirits, reassure you or push you on to greater things. Most are gathered from facebook pages throughout the daily onslaught there and many which hit the nail on the head. 

Will it be inspiring or push someone to do something they might be doubting their ability to do? Is it time for me to become a leader for a moment after all I was taught to lead by example?

Well, actually not today Thanks. 

I know that for some a tough week is governed by their workload where as for others it is governed by their health. Sometimes physical and mental. This week for me it has been the latter so although I would normally relish the chance to encourage others. The challenge I thought may shake me up and encourage a change in mood but I find that this is leading me in it’s own direction. Maybe I will re-do this challenge at a later date when in a different frame of mind, but for now it’s one day at a time. Meanwhile Thankyou again to my nominee http://www.TrulyUnplugged.com

I begrudgingly returned South again last week which has left me rather blue and craving the place we have just left. The sanctuary removed I have been on alert again and feeling very unsettled. Hoping for changes for the better to come here and bless us with their presence and at times feeling rather broken and emotional.

This quote by Jamie Lee Logan’s page Princess Sassy Pants & Co is another good place to look. I find that she combines her artwork with quite often just the right thing to say. This reminder came when I needed it. 

Unwelcome Visitors. A frightening experience and a clear message.

Although this was written some months ago, 19/6/16 I felt that it was time to post it, since it was Halloween last night and the battle continues. The Daily Post – Eerie
Who are you?
What makes you think that I am an available vessel which you can enter?
You cannot occupy me. I am not for rent. Go away, Be Gone!

You cannot creep up on me, whilst I sleep, getting past my furry protector and wrap your arms around me, from behind holding me so tightly that I cannot escape. Burning under my skin, undetected stifling my scream so that it cannot escape. My mind screaming out louder and louder as I am brought to my senses by it but where there is no voice, willing it to stop.
You have no right to do this! To haunt my night and my thoughts. Who are you?
How dare you attempt to violate my sleep, leaving me fearful of the dark. You are not welcome here, be gone, vanish to where you came from. Return there, never to visit again, for you are not welcome here.
Get off my back, I will not bend to your will. I will remove myself from this burden, it has no hold over me.
I am not consumed by whatever this is. It does not belong here and whatever this is, is unwelcome.
I am safe, safe from this influence, I am calm. I am protected.
Whatever you are, my fire breathing dragon will set you free.
My body will not hold you, you have no place here within me.
My loved ones have my back, it is not yours to take. There is no room for a monkey on it.
I will not be swallowed up by anger, or hate, or confusion, or sickness.
My mind and body is safe. Not a haven for you, but for me where my good thoughts reign and are given space to grow. The results are beautiful and appreciated, not gnarled twisted and bitter.
There is no room for hate. I do not allow it space in my heart or mind.
Be gone Hate, there is no place for you here.

Whoever you are and whatever you are trying to achieve here, you have failed! Give up, Do not try any more, your attempts will be futile, you will fail every time because I am stronger now, than ever before. You cannot master me.
I choose my master, with care and love he does not control me, he loves, cherishes and supports me. Offering me strength and armour from influences like you.
So be gone, Back from whence you came.
Your cold hands, peeled from me, you cannot enter and take a hold. No fingers entwine around my chest, no embrace around my shoulders, for there is no room for you here. We are not available for rent or occupation. I am in control of my destiny, you have no say or influence.
Demons diminished, spirits be gone. Stop knocking at my window. Your time has passed, there is no room. I am not under attack, you will not win here, I will battle against you. So be gone, you are not welcome.

 

Wanting More

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This is in thought and Tribute to our beloved furry son, who we lost a month ago today.  We miss him every moment of every day and if there is a Rainbow Bridge that animals cross over. I hope that I will see him there in more than just my dreams. This is for Our Best Boy, who has left such a huge hole in our lives, which he filled with such love for us both.

Wanting More…

As you walked towards the doorway, your head pressed in my hand.
Try as I might I wanted to, but didn’t understand.
All the sadness you were feeling, was right there in your eyes,
To make you feel better in less pain, we tried and tried and tried.
I wanted to right there and then, just take away your pain.
But hold you close to me and not let you go again.

They told us you were poorly and that it was for the best.
So we sat and told you stories, whilst we laid there for a rest.
Your dad was right there with you, he took you for a walk.
He choked back oh so many tears he couldn’t even talk.
And when your time had passed and you laid upon the floor.
I cried and hugged for hours and wished I’d done much more.
So as I crave a moment, that you’ll put your paw in mine.
I hope that you’ll return to me and that you’ll find the time.

You see there’s not a moment, of each day that passes by,
When I do not stop and think of you and gaze up to the sky.
You see it’s where we look for Angels and listen for a sigh,
Just like you used to do, as time went slowly by.

To look into your eyes again, and filled with love for sure.
I wanted to do that once again I always wanted more.
But Nature’s cruelness once again, away from me she’d send.
The one who’d been there at my side, my dear and furry friend.

Has been a little while now and I thought my heart would break,
As thoughts of you return to me, each time that I awake.
They say that over time, we will repair and start to heal.
But such love and dedication, many cannot hope to feel.
You were so very special and grabbed hold of my heart,
Hook, Line and sinker Darling, I was yours right from the start.