Tag: health

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 

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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.

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

When it’s alright on the outside.

This is the inspiration beind this particular post. This picture came from Facebook as so many do but in particular advertising awareness for Crohn’s & Colitis.

It got me thinking about just how many people I might know who are dealing with an invisible illness. The ones where it does not show, people who we are sure they are alright because they don’t look ill. It occurred to me how  almost everyone we know fights a battle of some sort.

It could be cancer, mental health, abuse, addictions, or a physical illness or disability. It could be anything at all.

It is very easy to not think about what other people might be going through and just react to a comment, a look or an emotion but in a judgemental world that we are living in, just take a moment to think about it before your own assumptions take over. Some fight it all alone whilst others can have a whole network of support. Some simply cannot cope and will shut down hoping for the storm to pass. Some will talk about it whilst others will not everyone is different.

Respect those differences but if you know someone who has is coping with an illness invisible or not, just a small gesture to show that you are thinking of them, or that you care can mean the world when it all gets too much.

I know we have just had the season of goodwill and you might be feeling that New Year warm fuzzy feeling but can we extend that around the rest of the year and it might just start to make a difference in our lives. I’m not asking for world peace, after all who am I to ask?

To Those Who Are Getting Help. 

This is a bit of a follow on Post from the other day about CBT When Those Three Letters Mean Totally Different Things and when it’s just time to Breathe!

Someone very dear to me and whom I haven’t seen for some time had told me that they are getting help to work through their issues. I am so happy for them since although I love them it has been really hard for me to stay away but I had to for my own good. I didn’t want to be hurt again. So this is kind of like an open letter to them and others seeking some answers from within who have decided to speak to a professional.

First of all, I am proud of you. Now if you don’t know me personally then you might say, so what! But, down the line if you get to thinking have I done the right thing? Trust me if anyone is proud of you then it helps. The first step is to recognise that there is something you need to sort out and by seeing a counsellor then you may find that you understand better and can help control the emotions that wreak havoc.

Secondly, if you get past the group therapy of a CBT course and feel you need to see a counsellor one to one you are going to feel emotionally exhausted once you start talking. The process of opening up and talking about your innermost thoughts is going to hurt like hell so you are going to need some pretty tough people around you as you act like a child from time to time and let it all out, which is totally normal and part of your healing from whatever you are going through. You will release whatever is inside and the way it comes out may surprise you. Leaving you thinking Who is this person I fail to recognise? 

After your sessions, take a walk on your own. Sit in the car for a while, take some time for yourself to calm down before you drive home. If you like me felt sensory overload then you might also want to escape afterwards. But although you may want to flee the scene, for goodness sake do not drive when you are emotional if you can avoid that since you are most likely to lose concentration which could cause an accident. I used to sit in the car for about half an hour, do something like check my Facebook or text my friends and family or call them before heading off and then I used to just drive.  Go and find something beautiful to look at somewhere, or feel the wind on your face for a while.

I was also advised to Do something for yourself, just you every week, then every day. Just one small thing can make a huge difference when you are running around after everyone else. For me it was to become creative again and write whenever I can. I still come up against obstacles when someone would rather that I did something else. But I am hanging on to this one thing for me although it began as a small part of my therapy. It has become so much more.

At the end of it all you may feel a bit lost and wary of people since you have opened your heart and mind to a relative stranger and are still pretty raw. So take time to heal your mind, body and soul. If you can, during this time try to avoid getting drunk or high (if either of those are your thing) since you may feel differently to how you were before and may not actually recognise the person you are becoming.

It will take time so allow yourself that. Good Luck on your journey and when change begins to happen for you, however hard this might be, embrace it. You never know what might happen. Remember that there is a future out there and you have a part in it.

A Familiar Pain

As I read posts here and there about women going through the endless quest for a child, I cannot help but feel their pain and the suffering they are going through. All those memories suddenly returning of being hopeful that this was the month when my period would not appear early and the tightness in my abdomen and swollen stomach would mean something other than an Endometriosis flare up. My heart goes out to these ladies every time that I read of their torture. There have been two such posts that have popped up on my news feed this week. I hope that those ladies do get their wish and are able to bring precious souls to the universe. I know that if they are lucky enough to do so that they will shower such love upon their miracle babies and praise the IVF treatments they put themselves through to get that longed for baby.

I do not have an IVF journey to share instead I tried everything that the Drs suggested just to try and be pain free and it wore me out. My partner had not expressed a wish for more children so when I was told that we would be eligible for one course on the NHS at a time when I could not have felt so ill equipped to deal with a pregnancy we had a big talk. He could see that I was ill and he told me that from his point of view he had everything he wanted, he did not need a child to be the icing on the cake. He was happy with me so I wasn’t under any pressure to bear children. I thought that when the Doctors told me at 17 that I wouldn’t have children had really done a number on me and I hoped that one day I would just prove them wrong. Alas it wasn’t to be. So as for IVF I would give up my chance and not pursue that route. It felt as though I would be trying to force nature and perhaps someone else would give their child better chances that I could not. You had to both want it so badly that you would go through everything to get there. I thought that I would have made a good parent, others told me that I would. I loved children and in the early adult years was everybody’s babysitter, a nanny and honorary Auntie to so many. There were a few occasions when I thought that I might be pregnant again. Periods were late, just by a few weeks which never normally happened, but then Mother Nature would play her cruel trick once again and I would be left quietly devastated.

I settled into the life we had and the pain of a condition along with multiple surgeries over the years and prayed a lot. That if it were right we would be blessed with a child and if not, then the pain would go away. Over time I asked about more permanent solutions since my symptoms were clearly cyclical and getting worse I was finally given the green light on a hysterectomy having fought to have one for several years. I was told that they didn’t want to do it as I was too young and had no children. They said it would be irreversible and force a medical menopause. I argued that having been told I would never bear children at 17 what were they waiting for, why prolong it any longer? I could have had a life and been pain free before now! Finally someone listened to me. A week before my 35th birthday I was scheduled for a hysterectomy and I thought that my Endo problems would be over. In my mind it really was a case of New Year New Me! The one thing that wasn’t explained was that even that could not heal the condition as it is incurable. Yes it could slow it down ease some of the symptoms but it could come back, as I would find out.

I was in surgery for several hours, they cut me about a lot and as my partner paced the hospital in the snow smoking and worrying about me, as they stopped the haemorrhaging he was glad that I had made it through. As I healed I felt that my life was truly about to begin. Full of hope, ambition and excitement for what might happen next. A healthy and happy future together pain free.

For a few years, I championed the work of the surgeon. I happily recommend him now to other ladies who need to see a specialist for the condition since he is the only Dr I have met who understands it. He had after all enabled my life to start given us me back. There was an Endometriosis support group at the hospital and I used to go there after the operation. I even did a talk and told my story there once. My partner was so proud of me. Prior to the surgery I had often had thoughts that I shouldn’t be here anymore, Endometriosis can do that to a girl,  it was usually when my hormones fluctuated uncontrollably. But then I thought that some people might miss me and they shouldn’t have to. My hormones had a lot to answer for!  It was a huge step to be able to speak there in public at that group and when people came up to me and told me that I inspired them it made the stage fright worthwhile.

I threw myself into my work, getting on with our lives together and for some time felt no pain. I went on HRT within 24 hours of the operation and have remained on this since. Opting for patches rather than tablets due to suffering with irritable bowel for all these years I did not wish to lose the benefit of the HRT. About 2 years went by I think before I started to get those familiar dragging pains back again and I remember asking how it were possible that you could get the same pain when you no longer had the equipment. No-one seemed to be able to give me a straight answer and by then I had been signed off as healthy by the gynaecologist. I also received a letter saying that I was no longer required for smear test screening since I no longer had my ovaries. (Yes they actually wrote that! ) I began to research how on earth I could be getting Endo pain again when I’d had a hysterectomy. In my naïveté I had assumed that that was it and I would be cured. I got on the hysterectomy association website again and checked the forums and to my horror my fears were confirmed. There is no cure! 

In all the appointments after a diagnosis which on average takes seven years, I did not ask. I merely accepted it when I was told by the consultant that “There is no sign of Endometriosis” after the operation at the time that sentence had me doubting my sanity more than I ever had before. I asked my partner had I imagined it all these years and gone through all that uneccessarily? Had the other Doctors got it wrong then? No, he reassured me that it simply meant that he had removed all traces that he could find at the time. So after that I was discharged from his clinic.

The Endo pain comes and goes, in times of stress it flares up along with the irritable bowel and my stomach swells making me look as though I’m pregnant, sometimes adding several dress sizes to my body overnight. It causes pain in the strangest of places and I have no idea whether it requires further surgery. After all, I wonder what else could they take away? Sometimes it is a chronic pain which doubles me up making me shake. Leaving me wanting me to hide away all I want to do is curl up and sleep for days. Other times I get by with rest and painkillers and there are times it stops me doing things that I would love to do. It has had a devastating effect on my sex life. I am not alone, so many other Endometriosis sufferers go through this. Far from giving me the freedom to enjoy sex more which I had hoped for, the hysterectomy was like flicking a switch on my libido plunging it into darkness  where I often can’t find the switch to turn it back on again. It’s devastating when two people who have always found each other the best thing since sliced bread with great chemistry are suddenly just not being turned on so much. We both felt cheated by this since no-one had forewarned either of us. Over the years since then our relationship has shifted and Thankfully we are strong enough to handle the ups and downs and can still light each other’s fires even though it may not be as often as before.

He told me years ago that if we did not have children of our own then we would raise puppies. Our second one since then has joined our family taking the place of the first one who left a gaping hole when we lost him earlier this year. For me that loss was like the miscarriage of my youth all over again. Having your baby suddenly gone can tear you apart as well as open up old scars. It took a while but we needed that unconditional love back in our lives so we lavish so much love upon the new puppy and he is happy here.

Whatever your circumstances. There are some wonderful support groups, on Facebook and other forums now. When I first went through this before my illness was diagnosed I was reliant upon libraries and a disinterested GP who was happy to palm me off, as is so often the case. I knew absolutely no-one else who had these symptoms so felt that there was no one to ask. Most of all you need to know that you are not alone. As a statistic one in 10 women suffer with Endometriosis but it is natural to doubt your own mind when your body is doing unexplained things to you. If you have chronic abdominal pain, or just that something is out of the ordinary with your body and it worries you then please ask your GP. Do your research via these forums and get a second or even third opinion. The social network is a good place to start but you do need to get it checked out by a professional.

If you are UK based and diagnosed or think you may be living with this condition then please take a look at the attached links Endometriosis.Org – Facts

Should you wish to connect with others in the UK please go to Endometriosis U.K. But other groups and locations are available worldwide.  Endometriosis Sisters Support Group – Facebook is  a place where you will find so many people who will inspire, encourage and advise you, based on their own experiences of dealing with this condition. You will also find lots of research articles via Bloomin Uterus Blog

You do not have to face this alone.

 

CBT When Those Three Letters Mean Totally Different Things and when it’s just time to Breathe!

It confused me slightly when I first heard the phrase. Compulsory Bike Training was what came to my mind with them as when years before I had learned to ride a Motorcycle this was a legal requirement. I did the training then the throttle jammed I rode the motorbike up a wall and it landed on top of me see  Almost a Biker Lots of physio for several months put pay to me ever getting back on one since then but I still have my bike gear in case I change my mind.

There I go flitting off on a different subject, Oh the butterfly mind again.

CBT -This time we are talking about Cognitive Behavioural Therapy 

When I first attended Therapy for PTSD & Trauma following an accident I was sent into a group session for this therapy and to be perfectly honest with you I hated it. I tried really hard to be the positive one and take good experiences from it but dreaded each session, leaving early from home, sitting in the car thinking “I don’t need to go” sometimes getting out and having a talk with myself to pull myself together before getting back in the car and heading off.

At the sessions I could relate to what they were saying. I knew some of this stuff anyway but somewhere along the way had stopped applying it to my everyday thinking, or even when I really needed it. I had felt that sometimes I was unravelling and I really didn’t like the feeling. I did not have confidence, it had gone but I did retain the ability to instil confidence in others which meant that I fooled myself into thinking that I was recovered long before I actually was. As the weeks went by there were a few other people who turned up early and we would sit and talk to each other before the sessions started, some were very open about their reasons for attending, others were a little more reserved.

I do not actually remember her name, but she was post operative transgender who had been placed in a homeless facility. She had been Hospitalised  due to someone taking offence at her and had lost her home and her life as she knew it. The authorities moved her there and she had to share the whole facility with men. Following her ordeal she was wary around them and they saw her as skivvy to them as a woman but did not accept her either because of her sexuality. She was going through hell, but was fighting a battle against abuse substances and alcohol too. There is always someone worse off than you If you can think past yourself, did she but know it she helped me too. She just needed someone to talk to, to hear her since she had tried to commit suicide and felt so alone but before that would happen she, like I had to go through those sessions. We both struggled with the group sessions. I think everyone did but in the end I hope that she found them useful as I have done and found an understanding counsellor.

CBT taught me how to remain calm at least on the outside when the inside is in turmoil. Many talk of fight or flight and I think I was born to fly.  Unless I have a bee in my bonnet and decide to stand my ground which does happen, from time to time when my stubbornness kicks in. It also taught me that not all gut feelings are to be ignored. Yes we sometimes get things wrong and don’t see them the way we should due to paralyzing fear when we are in that fight or flight mode. 

If you look into this type of therapy then CBT is described as a type of talking treatment that focuses on how your thoughts, beliefs and attitudes affect your feelings and behaviour, and teaches you coping skills for dealing with different problems.

It combines cognitive therapy (examining the things you think) and behaviour therapy (examining the things you do).

It forces you to rethink your first reaction to something in a negative or stressful situation and focus the mind to enable you to calm the body. It is beneficial if you suffer with anxiety or depression.

But if you can’t quite get your head around what is ruling it when you are stressed out…

Then it’s time to breathe. By regulating our breathing we can give our mind the chance at rational thought when flight or fight kicks in. Just a few deep breaths can make the world of difference. Don’t believe me? Just try it next time you are wound up.

Take the deepest breath you can and hold it whilst you count to three, then breathe out from as low down as possible in your stomach, do this three times at least. How do you feel now, a little calmer perhaps? I tried this at night when I was having awful nights with very little sleep. I found it improved that too. It was just too much for me to expect me to clear my thoughts as I did so, but just that small change has helped me.

After these group sessions and before I saw my one to one counsellor, there was a three month wait in between, whilst I tried to put into practice what I had learned and deal with the day to day, rebuilding my self confidence and with it my life.  I thought that I was doing so well I learned to block out my gut feelings for a while. I became mistrusting of them thinking that they should all be ignored as my brain struggled to cope with what life was throwing at me. It was a mistake. 

In certain situations I had a very strong feeling usually about people I met and during that time I did not trust my instincts and I should have. I put my trust in some people who saw weakness and chose to manipulate me and a situation, which left me wide open to their attacks. There I was kidding myself that I had my strength back, after all I was fine on the outside and wasn’t going to let it get me down. I got a new job, I thought I enjoyed it. I got on well with almost everyone there, was eager to please but could do nothing right for my direct manager. I spent a year working with a team where I just didn’t fit in.  Try as I may I could not change that, they had seen me as a usurper, someone who was there to break the little clique they already had.  For 12 months I tried my best, but struggled and felt as though I was drowning.  I had become even more withdrawn, desperate and miserable, when beforehand I was trying and had started to become upbeat and positive again.  Whilst I saw the counsellor with whom I was referred for a totally different reason, to get me through the trauma of an accident I spent the majority of the sessions discussing my job, the situations I was in and how I should cope.

I really felt that I gained a benefit from the one to one sessions. She told me that it wasn’t me, it was them. Where I had been beating myself up, figuratively speaking for months thinking where did I go wrong?  I found that running the situations past her, someone who wasn’t biased like my partner or mother, might help me see more clearly. She advised me to find a new job for my own sanity and get out of there, she could see the damage it had done to me over the short time I had been her client. Furthermore, she said I should also find something which made me happy, to do something for myself at least once a week it would help my recovery.  She suggested that since I was missing my creativity, (it had gone when things started to go downhill for me) that I follow my true nature and get creative again. I began with a simple adult colouring book and it seemed to open the floodgates, just the simple act of adding colour to the pages.

It took a while but I did and began to write poetry again.  After a while there were quite a few poems. I thought about a book, but did not have a clue how to get my work out there or publish it. So I decided to begin the blog so that at last I would be able to have a voice again. I had felt that there were very few who were inclined to listen, however my counsellor reassured me that my voice would be heard.  I am not talking about shouting from the rooftops or getting on my soap box about subjects. I needed to make sense of the things that were in my head. It was part of my therapy and would help me more than I could have ever anticipated.

I am not out of the woods yet, figuratively speaking there are times when thoughts are dark and miserable. There are others when I am extremely happy and there is so much in between.

If you are feeling depressed or suffering, please do not do it alone. Whatever it takes to get your help, speak to someone, if you do not have someone you can trust then call a helpline.