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.

Slowing the Pace 

DSC_009411/5/17

In the past week or so I have been thinking a lot. I’m told that my brain is fluffy since we arrived. I do feel a bit more fluffy since I have arrived, less stressed about most things and I have caught up on my sleep at last. It is good for the soul being here. I am probably letting things wash over me where previously I might have worried about them. I don’t know if it is a good or bad thing I have only been worried about him. Lately he has been doing the worrying about everything else which is really bad for him. He is getting about 4 hours sleep a night and his health and brain is suffering doing himself physical damage because he is run down. But he is like a man possessed trying to get things done, as though his time is running out. I hope it is not.

We do not have an endless time here and will have to go back South for many reasons but he does not have to do it all now. There is time and there is no schedule up here. The summer is coming, we will make preparations for our next visit before we leave.

I have been in a fuzz on the full blood pressure tablets lately but really struggled with breathlessness when I have cut back to half, despite becoming fitter due to the hill walking. So although there has been less of the usual stress clearly my body is still letting me know it still needs that different pace and medication is slowing it for me.

I am two cups of coffee into the day before I can function but am sleeping so much. Knowing that Endometriosis can wipe out your energy reserves at the drop of a hat. I am still in pain but trying to work through it on most days, not overdoing anything just trying to do something constructive each day. It doesn’t help that our time clocks are way out of sync. We are getting to bed as it gets light whilst he drops off to sleep on the chair after dinner. I have trouble waking him up to get him to bed and by the time we get there we are hearing the dawn chorus. So half the day is gone by the time I rise. He leaves me to sleep and then resents the time it takes for me to get off the ground.

We are trying to raise funds here by selling off some of our excess items but there are not that many up here since the break in and the hardships that followed. We will do the best that we can in order to stay here as long as possible. We do not wish to return to our lives down South at the moment, they have caused so much misery and heartache in the past 12 months that I would rather have hunger and a very basic life here feeling safe and healthier than I have been in months.

I was walking the dog at 3am this morning. It was a beautiful full moon last night and the Farm track was lit up, bathed in its light with twinkling lights along the coast. It was almost silent, but for the small animals in the hedgerows.  During that short walk, everything seemed totally right with the world. I felt true happiness in an instant. I could have happily walked across the hills for miles. No one around, alone with the dog and my thoughts. Silent from argument and cross words caused by pain and stress, the worries washed away in the moonlight. I loved the outlines of the tress around in the woods that surround us here. The bull in the field that we visit every day, slightly surprised to see us and snoring gently by his barn.

We were totally at peace there in the moment. Whilst I walked along hoping and praying for a small miracle to enable us to stay here and calm our souls some more. It struck me that here in the darkness, I felt totally safe as though it was the most normal thing in the world to wander the hills in the dark at that hour. It was truly invigorating. I noticed that for the first time in months, I do not feel depressed. For someone who has battled with this depression for a few years now, it seems as though being up here has lifted a huge weight from my mind for as long as I am here.  It makes me wonder if a more permanent move would be better for us all instead of the back and forth.

When the weather is warm and we have just enough to get by, then we are extremely happy up here. A little left over would be a godsend. I worry about lack of contingency funds. Since the truck has played both of us up in the past week and we are several miles from shops for supplies.

As he heads off out today, the truck has struggled again to start. There is muck in the fuel lines we think from when it ran out of fuel and it is causing us real problems. The tank is full and there is fuel cleaner in there but it is still threatening to conk out at any moment which is an extra concern we really don’t need. A return from the mechanic and it seems that it might be something more an auto electrical problem, here’s hoping they can get it fixed.

Wishes

Wishes carried on the air,

Make me strong and make them fair.

Give me courage, my strength prevail.

I am not weak I will not fail.

Take this fire and send it out.

Make my words become a shout.

So I can end all this mess,

Return again our happiness.

Build this wish by power of three,

This is my will, so shall it be!

The Process of Therapy


So as I continue with the next session of therapy for this round of counselling. I thought I would share some more of my thoughts on the process.

28/2/17 Today’s Therapy Journey.

Today I spoke about what had been happening to me over the past 12 months since my last therapy sessions ended. I had thought that I was doing really well throughout the year and felt that I had made a good recovery and progressed. There was the fact that I followed this therapists advice when she told me to get creative again and it took me to places I did not expect. For which I am very grateful. I told her about this blog and how it has helped me in so many ways over the past year. Yes it’s actually been a year to the day since I started my blog and wrote my first post for India Blue. So much has happened. It began as part of my therapy and has grown into something so much bigger and better than I imagined back then.

anniversary-2x

WordPress Happy Anniversary 1 Year!

We also spoke about how I could change what I need to and what my hopes are going forward. What do I want to do? I still don’t know exactly but I hope that I will know it when I find it.

I am happy writing, as little or as much as I do, it doesn’t have to be continuous but it does have to be regularly.

This week I have homework!

She wants me to write, specifically what I would like to achieve from these sessions. How I would like them to help me. My instinctive answer was “to get my head right” it was a bit blasé of me, a throwaway statement but right now it’s not one I have a definitive answer to.

Thinking for more than just a moment.  From this bout of therapy I would like to discover if after I have gone through it, I can find what I believe is out there for me to do and be able to do actually do it. I am guessing that I am going to need help with doing that, but don’t know to what extent yet.  I still don’t know what my future holds or even where to start, sure I have hopes and dreams I just don’t know how to get there, lacking in the confidence which allows me to take the leap that I may need to. I admit it, to a degree I am scared.

I would love to know how to quicken the healing process. I would like to know if the thoughts and emotions that I feel are linked to the PTSD I was sent here with in the first place almost two years ago. Or does it just stop and go away? Can it grow worse when faced with new trauma or mutate into a different thing? I still feel an emotional mess rather a lot of the time, ill equipped to cope and I would love to know how people who feel this way do. I know that life goes on. It’s happening all around me, but I feel somehow detached from it an other worldliness surrounds it. If I could regain that control over my life and my destiny then I think that it would help. But I question whether we ever get to do that, have any control over destiny, or do we just have to simply accept it? There again it is in my nature to question everything and perhaps too much. There are times when I am confident, my brave face goes on and for a short time I can face the world and take everything in my stride, but it is not natural to me at the moment and underneath I often feel I am crumbling. I go home and once again feel exhausted, my mind and body aching, totally fatigued. It happens after each therapy session and often after I go out, just to do the shopping.

But buoyed by talking about something that made me happy, (my blog) today I came home and was met by an email confirming one of my fears. I am sad. The CPS are not taking the case against my neighbour who attempted to knife both my partner and I last year any further. So it seems as though he has got away scot free with it. Which doesn’t thrill me at all and renders me fearful of what may come my way. I now want to be staying here even less than before and want to change things for the better.

via Daily Prompt: Quicken