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.

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.