A Conscious Decision

This year I have made a decision that I will not document in my diary what the symptoms of my illness are day after day. Like so many other times in my life, I followed the advice of a Doctor who told me that I should keep a record of the changes to my health.

As I think about it, my health dominated most of year and I see that as a direct consequence of recording it. It consumed me.

How was I feeling?

I dwelled upon every change and duly kept that record. But why? What good did it do? Did it give me the reassurance that it was all happening when the doctors didn’t listen? No it didn’t.

In fact it made me feel worse, it was putting a huge negative right at the forefront of my mind day after day.

I think the final straw, or nail in the proverbial coffin for this behaviour was when the Neurologist I had been referred to for seizures, wrote me off without further investigation because his first thought, that I might be epileptic was proved wrong. He did not delve deeper into what was causing worsening seizures night and day. He simply decided that he did not need to see me and the nerve pain and shaking must be caused by a trauma or psychological issue in my past.

It upset my partner greatly and it really made me wild. So I trusted my gut instinct and had a chat with my GP about the painkillers I’d been described and that the seizures had begun at exactly that time. I asked for an alternative and changed them. You’ll never guess what, I have not had a seizure since then! Sure I still get shaky and have nerve and joint pain. But not one of the three consultants or the two Doctors thought that the painkillers could be the cause, they would rather blame some issue in my past for it all.

I’m not denying it I do have to accept that last year I was sick, very sick for quite a lot of it. I’m not completely well or miraculously healed at this point in time. But and there is one, I am determined to turn a corner and improve whatever I can even if I have to take one small step at a time, even if it is all via small steps it really doesn’t matter, as long as I keep going. Along with my nature of being a positive thinker at heart after all of the knockbacks I am trying so hard to return to that state of mind.

So I am dragging myself kicking and screaming into this new year with the determination that things will indeed be different and better and my good health will once again return and the opportunities await me and I will see them in time and grab them.

I will not wait for this to happen now, or for doctors who last year failed me at almost every turn, failing on both diagnosis and treatment. I have decided that from now on, it is down to me to make improvements.

I have had to make the changes. As someone who lacks self confidence I am naturally reluctant to change so have to be pushed. I am grateful at such times for the driving force that is my partner by my side. He often wonders if I would do anything new without him. Of course I would, it would just take me longer to get off the ground and I might not see it all through.

But I am working on that. I used to have a “self destruct button” as he put it, where I would take silly risks, or not think things through before jumping in to something with both feet. He has taught me over the years to think things through beforehand. As a consequence we talk about almost everything especially if it is likely to affect us both. It not only makes us stronger but saves a lot of heartache.

So this year I would like my lovely new fresh blue diary, a present from my sister. To contain happy thoughts. Things that I will achieve. Items that have come our way. Wonderful things that we have seen, or done. Great experiences and pleasurable moments. So that at the end of the year, or even part of the way through it I can read it for inspiration, love, gratitude and so many other wonderful things safe in the knowledge that I am doing exactly what I am supposed to do with my life. Live it and love it.

It’s my birthday tomorrow which always gets me thinking about the future.

I am not dwelling upon the past or an increase in my age, for that is just a number. But I am grateful for the wisdom that comes with each year that passes as I grow older. For what the previous year has taught me, the lessons and the challenges I have overcome and the things that make me, just me.

Advertisements

Letting Go

It is that time of year, the very last bit where we cannot help but to take stock of the year that has been and think about our hopes for the new one that’s coming.

What we wish to let go of, the old habits the things that no longer serve us.

And so it began on the early hours of this morning. The brain dump. You know those snippets of thought which do not give a clear picture, they are just random things flying around my head. A thought here and there which doesn’t make sense and then is gone forever.

Letting go.

So what am I letting go of?

Firstly, the thoughts that I am a sick person. This is a big one, I know it to be true but it is not who I am, therefore it should not shape me.

In the past few months I have got nowhere, it has held me back from living a life the way I want to and although I have rested the body and the mind I have felt defined by it and that should not be happening. I have relied upon Drs to find and treat the cause of illness and they have failed me, pushing me from pillar to post as they tell me that it’s not what they think it is, whilst not finding out what it actually is that has made me so suddenly and inexplicably ill. I do not fit in their box. So they have left me out in the cold to fend for myself and all that time has been wasted and I am left doubting my sanity and my longevity.

I am Me.

I am still the person I used to be, but I have grown. I have awakened parts of me which have been sleeping. Hidden from view for so long I had forgotten that they were there underneath all of the other stuff that has been going on.

I am still a loving, caring, partner and friend, daughter, mother. I am a great listener and confidante. Someone who offers careful advice when it is sought. Who will happily teach what I know to others if it helps them. In return I ask for consideration, for care and occasionally thanks for my efforts. It does not make me a bad person, I do require validation to know that I am not wasting my time and know that I am doing the right thing.

I am letting go of the victim inside, as I said to someone recently, that is in the past. Long gone and I have dealt with it and the fallout. Again it does not define me for that is not who I am. I have been victimised for the past few years and had some of the darkest thoughts of my life whilst I struggled to deal with the fallout from it. That is not who I am. I want to move on from that now is the time. I have battled it and the depression which comes in that package and I want to move on. Stronger from the experience not allowing it to hold me back any more.

I have done my grieving. For the Loved Ones we have lost, we cannot bring them back. Only the memories remain, sometimes a tear will fall and catch me out, but I will not wallow in the depths of grief or dwell on the circumstances which caused the loss.

Too much time has been spent dwelling on the past. The past is gone. It is time to move on, metaphorically and physically.

There is a whole world out there that I have yet to see.

But I don’t need to see all of it. Some of it the way that it is run, the damage that is being done to it and the people that are hurting each other in it, are not what I need in my life. I owe it to myself not to be drawn into this first hand. I have figured out that I annoy always strong enough to cope with the fallout.

As with so many things, I need to protect myself better. I need the connection with the earth that surrounds us so I am planning to spend even more time in nature and learn more about my foraging journey, it has taught me so much in the past year alone, given me medicine to heal my body and options with which to feed my family. I will grow more in whatever space I have, plants to nurture and care for us.

Friends and family. Over the past year, I have taken time out when I needed to. There have been times when the only people I have seen or spoken with for weeks have been my partner or my mother. I love the bond that I have with them both, but just sometimes I need other people in my life too. There have also been times when their company has been more than enough for me and I have sought, or even craved silence and solitude. They have often fought to understand that, but have given me space nevertheless. I want to see more of my friends this coming year, the ones who are still there or me and haven’t fallen by the wayside whilst I have been ill. The ones who care enough to make the time and effort that is needed to maintain a friendship. The ones who are not phased by my strangeness, the new things I want to try and still embrace me for it. My sisters and brothers, not bonded by blood but by shared interests, a love of life and all that it holds for us.

So as I attempt to let go of all the things that no longer serve me, a decluttering of the mind, body and spirit. I am starting to feel as though a weight is starting to lift.

The light that surrounds me, I need to let it in, it can only shine if it has a power supply. That has to be me, no one else. I have to make that happen.

I want to inspire again. Teach again, be a mentor to others. Share knowledge and help others grow and heal.

I think that in doing so, I will also be able to heal, for I am not yet complete in that process and do not have to do that alone. With the support of others so much more is possible. I do not have to fight things alone. I am not alone, there are people dealing with the same problems, probably also thinking that they are having to deal with it all themselves and that is not the case. Someone out there knows your pain, they also might know how to make it better.

Divide and conquer springs to mind. Divide the problem and we will conquer it. As they say a problem shared is a problem halved. Although that isn’t always the case, it can often help so talk to people, if not in person then at least online.

So what am I looking for at the end of this year?

Closure on so many subjects.

I do not want to take the things that have ruled me relentlessly over the past year into the next one. I’d like to say that they have no place in it but as many are still work in process, I think the key is not to let them dominate.

There are things which are yet to conclude, but the wheels are in motion, which means that I am not standing still, helplessly waiting on others to do as they should.

Next year I have to go out there and get it, whatever it may be. Grab the bull by the horns and steer my life in the direction it needs to go. To make progress, however small the steps at first. It is important for me to remain moving, not get set in the concrete caused by fear or trepidation.

I don’t yet know how, or what. But I do at least have my why…

If it is all left to chance, then there is a lack of direction and that easy come easy go doesn’t really suit me of my needs. I like the reassurance that there will be provision for what is needed. Food on the table, bills getting paid and flying along by the seat of my pants is not the way forward for me. It’s too stressful, it has caused more arguments and upset in the past 12 months than we have ever had. So I need to fix that and I need to do that soon.

I have been the breadwinner over the past few years and to take an enforced step back from that has caused such strain that I have often felt broken and helpless. Flailing around drowning when we should be treading water. So if I am well enough to find a job, if it pays the bills then I will give it a go. If it is an unqualified job, with no responsibilities then it will be less stressful and I may be ale to rebuild myself to management level again at a later date. Physical capability might not yet allow me to follow my business dreams but I will hold them in my heart and mind and if I can start as projects or hobbies then I can build on those skills for later.

They are my dreams and I will not just give up on them. So I intend to follow some of mine this year.

Bite

via Daily Prompt: Bite

291117 Bite

Who knew that six Months of my life,

Would disappear in symptoms rife.

That I would struggle with all my might,

Just because of that one small bite.

In the teeth a mighty kick,

The result of a tiny tick.

Flooring me with a hefty thud

Suddenly infected my blood.

The shaking body and endless pain,

Diagnosis that I sought to gain

But here I’m ill six months on

Feeling dejected nothing done

Doctors and hospitals none the wiser

Changes in diet an appetiser.

Painkillers caused me problems galore,

Who could have guessed what they held in store.

Will try almost all that they suggest,

But if it came from me at my behest.

Felling shot back down in flames,

I’m not enjoying their sad games.

The blood is taken and tested once more,

How many times? Not keeping score.

Again it’s not sent for the right test,

Chasing them up for each request.

Testing again for this and for that,

Breathless, exhausted feeling flat.

Lethargy forces me to take cover,

With dizziness and falling over.

The independence that I had so long,

Or used to have, now seems to be gone.

Reliant upon those who I love,

Whilst illness continues to push and shove.

Shunted again from pillar to post,

Can I see the person who knows the most.

The one who can put the picture together,

So I don’t have to be ill forever.

The hope that is the tempting lure,

That they will offer me a cure.

Instead of hanging me out to dry,

As months and years go hurtling by.

The voice goes quiet when I speak,

As the brain fog makes me weak.

The strength from within hidden below

I’ve forgotten much more than I know.

Trauma blamed I seek to absolve,

But physical illness they’re yet to resolve.

This thing that brought me to my knees,

They’ll tell you it isn’t Lyme Disease.

But this sickness by it’s very design,

Will limit your movement and you’ll resign

Yourself to the life that you once had,

Before they accused you of being mad.

The person you knew, where your light once shone,

Unrecognisable from then, now has gone.

Your forthright opinion can make you bold,

Before Depression finds its stronghold.

But ruled by the pain and distress

You’ll find yourself settle for less.

Some answers that you seek to find

To reassure it’s not all in your mind.

Desperately trying some new fad,

If it works you’ll be so glad.

Time goes on you’ll clutch at straws,

But the same old story often bores.

Now only your true friends still remain,

Their Love outshone the sad refrain.

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.

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.