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.

Overload

via Daily Prompt: Nervous

It sometimes feels as though too much.
Indescribable feeling, not unreal as such.

Fatigued, exhausted from it all.

Setting myself up for a fall?

I try to sleep, but sleep won’t come.

Nowhere from it that I can run.

I worry it will swallow me whole 

Falling down this great big hole.

I feel the senses overload,

As I travel on this road.

Sometimes uncontrollable quakes,

After which my body aches.

Often feel as though bound and chained.

When I have felt my energy drained.

All the senses heightened here,

Shaking, sweating cloaked in fear.

Sounds so loud, then they are gone.

But they tell me nothing’s wrong.

Suddenly I’m temporarily deaf, 

Frightening leaving me bereft.

I asked them the problem to address, 

But they say it’s caused by stress.

I tried the calm. To meditate.

Can’t force the quiet, myself I berate.

My voice has changed, I cannot shout.

When I try to let it all out.

Swollen throat I almost choke, 

Sending the message my body has broke?

My mind and body feel detached,

Suddenly, became ill matched.

At this time I feel bereaved.

For what’s been lost, I am aggrieved.

I rest a while and floating free,

Willing just to return to me.

The blood is pounding around my head, 

Surging, thoughts fill me with dread.

With gritted teeth and clenched jaw,

My muscles aching and so sore.

Is this real pain or anxiety

there’s changes needed to just be. 

Cannot just stay powerless,

Wanting to relieve the stress. 

A deeper meaning I search to find,

Whilst hoping it’s not just in my mind.

All in a Blur

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This past few days have been a bit of a blur.

We have the news that my partner needs Major surgery imminently and has priority listing, we are waiting for a bed. His pre-op date has arrived within the week, it is soon.

It is almost like an altered state when I am outside looking in, except that it is happening around me. Lives going on, days going by, time passing elsewhere.

Waiting as though for something to happen. I feel dread, but know not what for. Just a sense of uncertainty on the air.

Perhaps some great change is out there and coming my way which will lift me out of this feeling. I am trying to remain positive so that whatever this is won’t bring me down.

The other day I had the first of my two long awaited appointments for different things. The hospital are going to do tests and scans, they really do want to get to the bottom of things.

A little fear creeps in, you know the nagging thought I hope that it’s not another hereditary thing. A bit like Hypertension but worse. No-one to my knowledge had Endometriosis in the family and Thankfully the line stops here from me. So far so good, my sister is Ok in that respect.

But this is not that, this is some old complaint, that hasn’t gone away,  over a period of time it has reared it’s head with new worrying symptoms. It could be related to the Endometriosis, which is the explanation I have given it until now. I talked frankly to my mother, about my beloved Grandmother and found out why she had to have a colostomy when she was young. Stage 3 Bowel Cancer with 8 weeks to live when they finally found out and operated. We worked out, she was in her 30’s. Younger than I am and she survived for about another 30 years. So there is hope. But I am scared suddenly and so is he.

The letter turned up the very next day, I had to book a SeHCAT Scan. The hospital don’t usually send thing first class post, he remarked.  That seems quick when I have waited six months to see the consultant and had symptoms for much longer. I called to book and have one in 2 weeks time. It comes under the “nuclear medicine” category. You have to take a pill, have one lot of scans and then return a week later for more.

There is pain that radiates through my nether regions daily at the moment and the Dog is extra cuddly, he is comforting me night and day should I worry?

I wake this morning, “what if I have the thing that I have been dreading?” Not the IBS which I have been living with for years but something else. Ever the practical one, the only thoughts going through my head being how would he cope with every day if I couldn’t do things? I will have to sort the loft out, he can’t get into the loft. If we had to move then he wouldn’t be able to empty it if I’m not able to. If I was really ill, we would have to rely upon others going up there. It’s odd the things that go through your head. It’s been a strange week, filled with both pain and uncertainty.

via Daily Prompt: Blur Image: Morguefile

Tremble

As I tremble, from the sheer weight of my feelings underneath it all. 

My hands are shaking, the blood races around my body.

I roar, the tiger inside momentarily wounded. 

Reliving the moments, I feel the pain of my recent past. Hurting from it all, renewed anger and sadness rising from the pit of my stomach. 

It is laid bare before a new person who didn’t know. She is in tears as I leave. Why did I do that to her? I did not do it on purpose or for gain it is my cry for help. The long awaited appointment. 

The ups and downs of thinking that I may have healed myself but the reality that the painful process has just begun again. I return to the safety of my car, where I sit and look at random things for a few minutes. My head pounding and a feeling of sickness creeping through my throat. I need to calm my nerves feeling numb, a bit dazed and confused. The next step in my therapy.
via Daily Prompt: Tremble

Broken Pieces

Broken pieces.

All these years and all this pain.
I wonder what there is to gain?
From time spent waiting for them to mend,
Broken pieces of my beloved friend.
Just fix him up the best you can
So life goes on for this lovely man
You see he has still things to do
Mountains and seascapes, enjoying the view.
A day with smiles and without pain,
Would give so much to see again.
And signs of way down deep inside,
Where Happy used to once reside.
The brightness of a sunny day,
Can often chase his clouds away,
But damp and cold within his night,
Will often give him stress he’ll fight.
So take up the challenge, make him well
I know that only time can tell.
If he’ll be who he once was again
But years go by it’s not a game.
Places to go, people to see
He’s coming there along with me.
He has so very much to give,
Give back his life to let him live.

 

Winter Hibernation


We have slipped into Winter Hibernation  mode here. Where we do not want to go anywhere and do anything. Going to bed late, in the early hours of the morning and sleeping until lunchtime, our days are spent playing catch up and with a sense of dread that I am wasting time. I should not waste time, it is precious and whilst I do not have a job there is in theory so much that I could do around the house and sort out for us but I am getting none of it done. I find this very frustrating and berate myself for it I am not by nature a lazy person but feel that I am being one lately. My job search is taking up most of my waking day, and it is getting me nowhere so the highlight is taking a walk with our dog together. We have not even managed that in daylight for the past few weeks. I am craving daylight but there is a lack of any motivation at present to haul myself out of whatever this is. Normally in winter months I do not cope with the cold and aches and pains that the season provides me with and this year it is slightly different. It is somehow worse, more depressing. Less desire to get out there even on the brightest of days. My ears are painful as is my throat with this annoying thing that will not go away and is as yet undiagnosed as I count the weeks off before I get to see a specialist. I have a cough which has not cleared and the doctor offers no solution to whatever causes the condition but it leaves me feeling exhausted and disoriented. On the plus side I am not shoving medication onto my system for that reason at least. I also have to see another specialist since I have been struggling over the past few months with pain and discomfort elsewhere But I wake from a night when I have been in bed for 9 hours feeling as though I have not slept at all.

I know that it is not good enough, it is no way to live and I need to haul myself out of whatever this is, and him kicking and screaming if need be. We are in this together though, currently cocooned in our winter life. He says that he is grateful for the time we have had together in the past few months. I am too and being able to form a lasting bond with our new boy has been an absolute gift. I have been here whilst my partner has been ill so there has been no pressure upon him and I have been able to help. But trying to move us in any direction forward has felt like an uphill struggle where we have not succeeded.

Am I trying to kid myself that all this time I have been nurturing my mind and body. Waiting to heal from the past few months experiences. I ask that, Am I kidding myself? Or has that actually happened and that is now leaving me feeling so restless.

January is always a month that leaves me feeling strange. My birthday month when I dissect the year before and what I have or haven’t done. Without he realisation that I am doing it again until it is done. I make plans, wishes even. I wouldn’t call them resolutions as such. For they have often disappeared by Springtime when I want for something entirely different.

I think about a slightly new direction, a bit of new life, growth. The things I want to achieve. It all starts out so well. Then so get to thinking how on earth I will go about doing these things, getting these done and making them happen and that’s when I get these feelings of doom.

It is cold and wet outside, our baby boy had spent too much time out in the wet in his previous life, so has no inclination to be out there for very long unless we are going anywhere. The ground is frozen so I cannot do much put in the garden. I am waiting for things to sprout. Now is not the time to haul stuff out of its, whilst it is resting and sleeping I must learn patience.

So what have I been doing? Well in the past week I have been cooking, if nothing else we can eat properly and the odd desert which is a break from the norm for me at least has been well recieved. I have also tried out the breadmaker which was gifted me by my friend. Much to the delight of the others the house is filled with the wonderful smell of fresh bread on a regular basis. I am imagining ingenious ways to use the food in the freezer to create wonderful things to inspire us. Sometimes it happens and other times we just resort to our chosen convenience food of pasta and… (fill in the gap) Interesting food may continue this week or I could make good old comfort stew with dumplings it depends if we can shake off these feelings.

Maybe if I stay up till 3am I will just be able to sleep, not be awakened from slumber at this hour instead. The random thoughts will have already exited stage left by this time and I can concentrate on the business of sleeping.

The Daily Post – Successful