Master manipulators

When people think of manipulative relationships they often think about the victims of domestic violence and the coercive behaviour that can exist within them. However it isn't just domestic violence victims that can fall prey to this kind of behaviour. Many do not realise that these kind of relationships can exist within families, friendship groups or in the work place. Often it is not until the person has disentangled themselves from the manipulator that they realise the psychological abuse that they have been subjected to.

When you are chronically sick it is all too easy to become the victim of a master manipulator. These are people that like to exert unprecedented control over your life under the guise that they care or are caring for you. Master manipulators can be family members, friends or carers and once in your life can be very difficult to get rid of.

A few years ago I fell under the spell of a master manipulator. It's embarrassing to admit that I fell prey to this woman's evil schemes but now looking back I can see that I was particularly vulnerable. I had lost a lot of self confidence with no longer working, I was fighting the medical profession for a diagnosis and I was being treated badly by another friend who had become bored with my perpetual state of ill health. I had also been subjected to this kind of behaviour by other individuals in my life for a very long time .I was the perfect victim and she seemed initially like the perfect friend, too perfect. 

Manipulators play the long game, sometimes their plans are literally years in the making. Initially they seem absolutely perfect it is only over time that their agenda becomes clear, to dominate and use the person to achieve their own goals. At the start of the relationship the manipulator bides their time assessing their victims vulnerabilities. Storing every piece of information away to be used at a later date when they wish to start dominating the victim. They never expose their game plan in the beginning as obviously if a potential victim becomes suspicious of their motives the ruse would no longer be able to continue. This is the exact pattern of events that occurred with my friend Bertha* (* names changed to avoid legal action, not to protect the innocent).

Bertha came into my life like a breath of fresh air, I had known her in my previous life and had found her pleasant enough. It was quite a surprise when she messaged me out of the blue and said that she and a mutual friend would like to come and visit me. As social contact at this point was quite rare other than the two friends who had stuck by me, I was flattered that they would want to come over. My first mistake was made I was too grateful for her visit. The friend that accompanied her I never heard from again! I imagine that Bertha had realised that I was socially isolated and provided good victim material.

Initially Bertha was like any other normal human being. She had my sole undivided attention as she wasn't working and would come over and see my several times a week. Slowly over time I began to notice small changes, where once helping me and hubby out on the odd occasion, mainly dog care so I could attend appointments, she started to arrive late so that I would only make the appointment by the skin of my teeth or arrive late. Once I asked her to take me to a medical appointment as without her help I wouldn't be able to attend. She seemed delighted to be asked, which to be honest at the time seemed a little odd due to the fact she had let us down at the last minute several times previously when we asked for her help. Her mood changed drastically when I told her I did not want her going into the consultation room. My health appointments are private, I needed to discuss some ongoing issues with my consultant safe in the knowledge I had complete confidentiality, as any patient would. 

On the drive to the hospital she went on and on at me trying to wear me down. She didn't mind coming in with me, she had driven me there surely she should get to come in? Why was I being so secretive did I have something to hide? We share everything why won't you share this with me? The 30 minute drive felt like a lifetime. When you don't allow a master manipulator the thing that they desire you are faced with a barrage of either abuse of emotional blackmail. Even whilst we sat in the waiting room she continued her assault. When she wheeled me into the consultation room she made a move to sit behind me. I was adamant however that she wasn't going to be privy to the conversation and politely asked her to "close the door on her way out." She let out a huge sigh and left the room.

Having her drive me to the hospital and take me to the appointment was one of the weirdest things I have ever gone through. Looking back now I can see it was just a means of control, she felt her reward for doing me a good turn should be hearing confidential medical information pertaining to me. When she wasn't given her reward she subjected me to emotional blackmail. I was left feeling like a bad person for standing up to her, yet hers was the behaviour that was totally unacceptable. The drive home was mainly conducted in silence, the silence was only punctuated with her sighing. I kept my mouth shut and pretended to nod off. I wanted to use the excuse that I was tired and needed to have a lie down to prevent her demanding to come into the house for a cup of tea. Her behaviour that day had made me feel uncomfortable at the time I couldn't put my finger on it. If I thought that was strange things would eventually take a weirder turn.

In time I noticed that things were very one sided on the conversation front. She would ask me a question and then proceed to turn the conversation back to her favourite subject, herself. I felt like I had become her counsellor and joked about it. I felt sorry for her that she seemed to have so many problems in her life. Many times she complained about the fact people she was friends with her suddenly dropped her with no explanation. If it had been one friend I could understand it but it wasn't over time it appeared to be every friend she ever made had suddenly dropped her and completely cut her out of their lives. 

A few years into our friendship I made a new friend. She came around every Thursday and stayed for a few hours. I enjoyed her company we had quite a few things in common. There was no pressure in this relationship it was natural and easy going. This new friendship highlighted the unease and dread I felt every time Bertha said she was coming around. Unless you suffer from an anxiety disorder the thought of a friend coming over to visit you should fill you with happiness. My feelings were the exact opposite. This was what I would come to realise a RED FLAG and I should have paid more attention to this and the many others in my life. Having panic attacks before people visit you or when their number flashes up on your phone isn't normal. If someone is inducing those kind of emotions then you need to get the hell away from them.

Initially Bertha made out she was really happy for me to have a new friend. She started buying me small gifts to show me how much she appreciated our friendship. She decided that she was going to start hugging me more or sitting next to me, rather than how we usually sat sprawled out over the two sofas. As my new friendship flourished, Bertha started to become more critical. She was never critical of me directly but critical of my house, claiming things were broken when they weren't and then my dogs when she got no reaction from me regarding her other critical comments. Out of the blue she told me Frankie had bitten her hand. I asked her to show me where he had bitten her, it was important because as much as I love my dogs if they were ever to bite someone and injure them, they would have to be put to sleep. When she showed me her hand there was no mark on it. However her complaints of being bitten now happened every time she came to the house, yet no skin was broken, there were no teeth marks and no blood was spilled. It started to really irritate me but I let it go as I felt sorry for her. 

As her attempts to criticise me failed to provoke a response she tried a different approach. She had always been bad with time keeping and responding to text messages taking 12 hours to 3 weeks to answer a message. I really dislike lateness and people failing to respond to texts in a timely manner. Obviously there are times when you can't respond to a text message when you are working or driving for example. She had heard me complain about these bad habits previously so started to use this as her form of control. Now on a regular basis she would turn up 2 hours later than the arranged time of our meet up. She would not respond to texts blaming her phone signal. Initially I believed her over the phone signal but seeing how much she was on it I couldn't understand why she was taking up this technical fault with her service provider.

About this time she was beginning to get caught out in her own lies. We had been friends for about 4 years and she clearly couldn't remember the lies she had told. When we first met she told me she was on the waiting list for two operations yet 4 years later she was still waiting. I know the NHS is slow but it isn't that slow. When I questioned her about it she claimed she had never been put on the waiting list. She had also lied about various medical conditions. When challenged she would claim that I was confused and that she had never said that. Her stories were beginning to unravel, I let her think that I believed this explanation and then started to deliberately ask her questions about other things she had told me over the course of the four years. I have to admit I got some sort of perverse enjoyment from it, probably because I felt I was playing her at her own game for the first time we were becoming equals.

As her lies were starting to catch her out and she knew that I was beginning to realise that she wasn't the friend I had initially thought she was, she started a new attack. My husband has two days off per week and these are the days on which we spend time together. I keep these days clear of friends coming over as I want to spend the time with the man I married. All my friends respect this, obviously if there was some kind of emergency or it was the only day that they were free then I will spend time with them. However I feel it is important that my friendships are not to the detriment of my relationship with my husband. As Bertha knew this she started turning up on hubby's days off claiming that it was the only time she was free. If I said it wasn't convenient I was met with "I haven't seen you in ages", "I will just come over for an hour or so". I felt due to everything that she had done for me and the fact that she came to visit me when others didn't that I owed her and I never felt strong enough to give a flat out no. I have terrible problems saying no to anyone that I care about.

My husband always tried to make himself scarce when Bertha came over. He didn't actually like her very much and she had started flirting with him. It made him uncomfortable and embarrassed for her. When it first started he had laughed it off politely and decided not to tell me. Unfortunately she wouldn't take no for an answer and her flirting lost its subtlety and became an all out attack. It was no longer taking place when I was out of the room but in front of me. At one point she stripped off down to her bra, when Mr Myasthenia Kid was in the room on the pretext she wanted to show me her new bra. As she was probably a size 30 (UK women's size at this point), it wasn't pretty. I have lots of female friends. I have never stripped off in front of any of them to show them a new bra.

I knew that the friendship was coming to an end, Bertha had pushed me to my absolute limit. The thought of her visiting me made me anxious, she made my husband and I feel uncomfortable in our own home and she was persisting with the ridiculous lie that Frankie was biting her, in the full knowledge that his life was at stake when she said that. She was becoming dangerous and it had the feel of single white female about it. I talked it over with my other friends, who had already made it clear that they thought she was odd and possessive. My problem is I worry too much about hurting other people. It seems the older I get the more I worry. I never seem to take into account the hurt they have caused me and by continuing to have them in my life would cause me more pain. That is the master manipulators spell and I have fallen under it too many times.

The problem is having been exposed to these kinds of relationships from a young age I simply didn't realise that no matter who the person is in your life, you should never feel emotionally blackmailed by them, subjected to the silent treatment by them as punishment for not doing what they want you to do. You should never feel anxious at the prospect of dealing with them. You should never feel that because of who they are you should endure a relationship where you are an after thought and are quite often made the scapegoat when things go wrong in their lives. That's not love, not family or friendship operate.

The opportunity arose to do the dirty and end the friendship. I had arranged for her to come over to the house at 13.30pm. As on numerous occasions she had arrived more than two hours late, I had text her at 11:30pm to check if she was still coming over, I wasn't very well and if she wasn't coming I would be going back to bed. This had no response, so I messaged her via social media at 12:30pm, again no response. The prearranged time for our meet up came and went. I eventually heard from her at 14:30pm via text telling me that she had just woken up and could she come over at 16:00. By this point I will admit I was seething but I was scared of her also. I kept my reply short and sweet and told her I was in bed and to forget about today. she immediately text me back all sweetness and light asking what was wrong. I told her that I was very disappointed in her and that I would message her in a couple of days when I had calmed down. 

I had taken back control at long last but I was shaking with fear as I pressed send. I had no idea how she would react, whether she would try and plead her case or go nuclear. She went nuclear and sent me a stream of abusive texts telling me I was an ungrateful bitch after everything she had done for me and that is the one that I can repeat. The others called me all the names under the sun. When I was faced with all this vitriol it was only then I realised that she couldn't stand the loss of control. This was the first time I had ever stood up to her and she couldn't stand it. After the 5th or 6th text I decided to block her number from my phone and then immediately block her from all my social media accounts.

For about 48 hours my anxiety hit the roof, I felt like I had been a terrible person to cut her off like this but it couldn't go on. This all happened over 7 years ago and I have had to call time on other friendships, nothing as dramatic as this and the anxiety wasn't as bad when I realised I deserved better. 

When you realise that friendship, family relationships, love are not something that operates on a transnational basis as in what you can do for them, you realise by walking away from them you lose nothing but the constant pain they cause you. You realise that normal people don't behave like this, they don't view others simply in terms as what they can do for them, they like people for being themselves. Only happiness can come from realising your worth.

May 2021

This May has been a weird month and it is now slowly drawing to an end. It has been unseasonably cold and wet. Which for many people including those suffering with EDS it means our join pain is much worse. There has been a huge study conducted using an app called "cloudy with a chance of pain" and it has asked it's users to track their pain each day and say what the weather was like. They have proven that there is a link between the weather and peoples joint pain, be that through Arthritis, Ehlers Danlos Syndrome, Mixed Connective Tissue Disorders and many more. Many of us could have told them this, without the need of an app. But hey at least we can't be laughed at when we say we know that the weather is going to change before it does. We are human barometers.

There is a huge low pressure area that is moving over the UK tomorrow, currently it is sat out in the Atlantic Ocean but it's effects are already being felt by many of us. My daily exercise was painful from start to finish. It took a considerable amount of effort to keep going. My reward for keeping going is more joint pain not less. Today I have the rare symptom of sole of the foot pain, making it incredibly painful to walk. Even with them elevated the balls of my feet feel like they are throbbing along in time to the music I am listening to as I write my blog post. ( If you are interested Taylor Swift Evermore Album, I have that and Folklore set up back to back on my Amazon music account). 

Photo credit UK Southwest Storm Chasers

The yellow area is the part of the UK that is going to be affected by the low pressure that is moving in. As UK Southwest Storm Chasers say it is an "unusual deep area of low pressure that will sweep slowly across a swathe of the UK from Thursday night into Friday. We will also see some heavy rain and with this some high winds. This will start to affect South Wales and Southwest England first through late Thursday afternoon "

So instead of feeling like I have the body of a 47 year old, I am left feeling like I have the body of an 80 year old torture victim whose feet have been repeatedly beaten with a piece of 2 by 4. I have put Ibuprofen gel on my feet that has menthol in it but I can't even feel the menthol which is bizarre. It would be easier to tell you what isn't hurting at the moment and that would be my face. That is the only area of my body that isn't hurting at all at the moment. Which is weird because I am sporting a lovely bruised eye lid at the morning.

Late on Monday night I noticed that I had a dark purple line on my eye lid. Initially I thought it was ink or something on my eye lid. I had been suffering from really dry eyes all day which always makes them itchy so I had been rubbing them far more than I normally would. I didn't think any more of it until I woke up Tuesday morning and saw that the purple line was dissipating and the bright purple line was now more of a dark red and no longer had defined edges. Excuse the state of me in the photo I had only just got out of bed and was feeling pretty rough.

It was a tiny bit sore but nothing major. By the end of the day it looked like this.

The bruised area is tiny and it has perplexed me as to how on earth I have managed to damage a blood vessel just rubbing my eyes like I normally would. I have never had anything like it before. My eyes are still really dry at the moment and I am being extremely careful when I rub them just in case! I don't want a matching pair.

I hate it when I have weather induced joint pain as there really is nothing at all I can do to lessen its impact. Pain relief doesn't work, keeping mobile doesn't do anything for the pain but it stops me seizing up. It is a case of dressing in layers and applying hot water bottles to those areas causing me the most issues. On days like today it would be lovely to have a body sized hot water bottle to take the worst of the pain away.

Add in a surprise period from mother nature, I am truly on my way to the menopause with the last one I had being January. So I have the fatigue, stomach cramps, bum and leg ache on top of all the other shit that it going on. It is working it's way to being a perfect bloody week. No pun intended. Yesterday I could have quite happily spent the day in bed and slept all day, I haven't felt that tired and drained in a very long time. 

I took a self care day and watched stuff we had recorded on Sky. We are watching Mare of Easttown on Sky Atlantic and really enjoying that. We are also watching a programme on Channel 4 SAS: Who Dares Wins. At the moment a lot of Jay's days off are spent resting, he is struggling to come to terms with his dad's passing. Last week was a very tough week as it would have been his dad's birthday and also his dad's ashes came home. I am trying very hard to remain the constant, the thing he can rely on and doesn't have to worry about, as he has enough on his plate to deal with. So despite wanting to crawl into bed all day I stayed downstairs so he didn't have me to worry about as well.

We will get there but I think I would be lying if I said that we both won't be glad to see the back of May 2021 or 2021 as a whole.

Just because he is gorgeous and unconditional love is so important.

The Fly

Well it has been pretty hellish of late health wise. Last week I managed to beat my personal best and have three migraines with aura within a week. Each time as they happened I was using a screen. I had noticed for the last few weeks that I was really struggling with a fabric I had been working with a tiny red and white check. Out of nowhere I had noticed it had started strobe - looking like it was stripey, instead of checked to the naked eye. I should have realised my sudden increased visual sensitivity was a warning sign of things to come.

For a really good visual representation of the sort of things I see when having a migraine aura this website is really good - https://www.migraineagain.com/how-to-know-if-you-have-migraine-with-aura/ It is the closest thing I have ever seen that would explain the zig zag lines in primary colours and the blind spots I develop in my vision. I tend to develop the blind spots first before the zig zags come on. My auras last for around 45 minutes to an hour and then the pain will start. Thankfully with the introduction of sumatriptan by the time the aura is coming to an end the sumatriptan kicks in. On the last three occasions it hasn't got rid of the headache entirely but even knocking it down to a bad headache is good enough for me.

Over the last week thanks to a lot of research I have found that people with migraine are very visually sensitive. It is something I have always known but it makes you feel better when it is confirmed in writing. I know as a kid there were shops that I really disliked going into as I knew the chances of them causing a migraine were high. There used to be a shop called C&A, which I loved and loathed in equal measure. Loved because I could get decent clothes at a reasonable price, loathed because of the patterned carpet, which would trigger a migraine or make me feel like I was suffering with a migraine aura. I don't remember much about the pattern, C&A has been gone from the UK for about 20 years ( so I am showing my age) .To find out more about C&A click }here{.

Medical papers have been written on the subject that Migraneurs are sensitive to light, sound, smell etc. One of the easier papers to understand should you wish to read further information on the subject  you can find {here}.

I have also always had a problem with stripes, it is the width of the stripe that is the issue. Thick bold stripes are fine they don't do anything to me however thin stripes and lots of them banded close together make me feel sick. Not because they are ugly or anything like that, its the gymnastics they cause my eyes and brain to do trying to keep up with their constantly changing pattern, especially if they are on clothing. As the person moves the fabric will move, causing a strobe effect that my eyes really struggle to deal with . 

Colours can also cause me issues, especially ones that essentially clash like olive green and turquoise - a Tula Pink Fabric, she does it in dots and a stripe. I love Tula Pink designs but I have ti limit my exposure to those fabrics as again they can make me feel overloaded visually. It is a really weird sensation to describe, I can feel light headed, sweaty and a bit panicked with them. I don't know if it id the fear of nearly 40 years of migraines or the feeling of not being able to see properly that causes me to freak out.

Since my migraines decided to ramp up this year, I have been keeping a food diary in case there was something I was eating or drinking that was triggering them. I would think I had found a trigger, so gin and dairy. Only to try them again at a later date and no migraine would happen. Nothing made sense and there was no food or drink that I was having in the 24-48 hours that proceeded a migraine that I wasn't having on any of the other days. I was beginning to lose hope that I was ever going to find out what could possibly be causing my migraines, when I had an a-ha moment. What if the trigger possibly wasn't what I was eating or drinking but something I was doing. On each occasion last week I was either using my mobile phone or chromebook when I suddenly would lose part of the screen and the screen would also appear to be too bright, burning the back of my eyes. So I did what we all do these days and Googled " do screens trigger migraines".

The first article I came cross was this one from Migraineagain.com - How to avoid a Computer Headache.  As I was reading I learned a lot, something when you have had migraines for nearly 40 years, can surprise you. What I discovered in this article was yes Migraines can be triggered by screens.....( so maybe I have found one trigger ) and that I didn't have to abandon technology due to it. I found out there were special Migraine glasses I could wear that could help me. The links in the article are only any good if you are in the USA. You can get blue light filters or glasses with blue light filters in, however migraineurs are not just triggered by blue light but also red light and light on the frequencies F1 and F4. So whilst blue light filters may help a little ( they may help others a lot) they wont stop the other light frequencies that are on the spectrum that trigger migraines.

In the UK there is a company called Migralens and their products are approved by Migraine Action a UK Charity for migraine sufferers. Now I need to state for the record I am not being paid to mention these glasses, I haven't received anything for free. I am literally sharing them because they have helped me so much since they arrived on Sunday afternoon. You can buy them as non prescription lenses or prescription lenses. The Migralens site is HERE. You can also purchase them through Amazon as I did as I was so desperate for them to arrive, although they are more expensive on there.

The lenses are very dark green and give everything a bit of a weird colour. I was using my embroidery machine yesterday and the green button to start the machine looked amber! Which threw me a couple of times making me think there was something wrong with the machine! I put my glasses on as soon as they arrived on Sunday and the relief was immediate. I had noticed this summer I was really struggling with glare from objects that were bouncing sunlight at me, going through a sunshine dappled road was causing me not to be able to see for a few minutes ( thank goodness I no longer drive), plus as I said earlier fabric I have been using for the last 6 months was now suddenly causing me to feel queasy and was making strange patterns. On putting the glasses on the pain I feel in my eyes pretty much from the minute they open subsided. I always thought that pain was dry eyes but no it is how bad my light sensitivity has become. I used my phone to check Facebook and my eyes didn't hurt and the screen didn't become wavy etc where my eyes just couldn't cope with it. I used my chromebook and my eyes didn't hurt. Within an hour the low grade headache I had since Fridays migraine melted away.

I wont lie it is a pain in the arse having to wear glasses ( for a non glasses wearing person other than weak reading glasses ) every time I use anything with a screen or lights. But the fact I don't have a headache more than compensates. This blog has been written whilst wearing them. I plan to buy another pair next month so that I have two just in case I damage one . They did make me laugh when I took a selfie wearing them

It immediately reminded me of The Fly

Showing my age!

In a cruel twist of fate I managed to come down with a migraine as I was writing this. Well at least I had 4 days without one!

You don't look in pain

A week or so ago a Facebook buddy of mine posted a quote on  her news-feed and it resonated with me. I expect it resonated with a lot of people because many of the people I am friends with online are people I have made friends with through Chronic illness groups. The thing we all have in common and a lot of the time we are not believed when we say we are in pain every single day be it through Ehlers Danlos Syndrome, Fibromyalgia, Migraine, Arthritis, adhesion pain etc etc. There will be people in your own lives that you have no idea deal with pain every day all day because they have been conditioned not to speak about it or just don't want to come across like they are looking for attention or sympathy.

This was the quote my friend posted;

I have spent some time this morning trying to locate the source of the quote so I can give an attribution to the author and unfortunately I can't find it. I have read some quite interesting pieces of information from blog posts, medical sites and chronic pain forums I will post some links at the end of the post.

Many people with chronic pain are disbelieved , especially when there is no "evidence" of what is causing the pain or the images from scans or x-rays don't correspond to the level of pain people are stating they are enduring. I had the same when I was suffering from terrible pains in my knees with my right knee being the worst. I was getting sharp pain under the knee caps when going up steps and suddenly out of nowhere when standing / walking.  I was taking morphine so it was accepted by both me and my gp that it must be bad whatever it was for me to be feeling it...when the x-rays came back it showed really mild arthritis. Due to it's location I couldn't be offered an injection into the joint. It was something I would just have to put up with. He suggested some exercises to help, which mainly consisted of doing plie's. After I did one in front of him and my knee caps made a sounded like a shotgun being fired he helpfully suggested that I avoided those! I still get the pain along with lots of others courtesy of my friend EDS, Migraines, Arthritis, Bowel Adhesions, Spondylisthesis etc etc

It's not just the medical profession that have difficulty accepting that someone is in pain. So many times I have been involved in conversations where people have made judgements about others saying "well it can't be that bad they manage to do X.Y. Z." It is even sadder when it is people within the same community who know what it is like living with a chronic health condition and the pain that comes with that. Many of us do things that we enjoy as a kind of pain relief. When my Spondylisthesis shifted a few weeks ago and left me in excruciating pain, that was waking me at night, I still crocheted, used my sewing machine and my embroidery machine. I ensured I kept to strict time limits do never sitting for more than 15 minutes without moving and ensuring I had adequate pain relief onboard. If I hadn't have been able to distract myself through those activities I would have had no relief at all. Yet some may have been quick to judge saying " well it can't be that bad she is still sewing etc". I can assure you it was. There were times I would sew with tears rolling down my face, or feeling sick because the pain was so intense I was struggling to stand.

If the pain is that bad why don't you lie down?? Was something I was asked. Well I would love to lie down but my back would never put up with me taking to my bed for days at a time as much as I would love to. My back manages about 8-9 hours of being in bed and then it gets so painful and stiff that lying in bed becomes part of the problem, I am the same lying on the sofa. My back hates being immobile, everything seizes up. It was the biggest issue I had when I needed to do strict bed rest when my CSF leak was at it's worst in 2016. I just couldn't do it without being in agony but then sitting up made me feel like my head was exploding. On those days I ended up hugging the toilet bowl as the pain was making me vomit.

The quote is true people with chronic unrelenting pain do operate at levels of pain that would floor most other people. I never know what level my pain will be at from hour to hour. Today I am in a lot of pain, I have no idea why. I haven't done anything to cause that pain. My pain is in my hands...great when you are typing, my hips, lower back, knees and ankles. I have had a hot shower, hot water bottle and taken pain relief but nothing is touching it. The pain doesn't stop, it is at about a 6/10 for me. I will carry on with my day as normal being aware of that pain despite doing other things. For pain to actually stop me doing something it has to be an 8/10 or above. Last night I nearly didn't go to dog training as my bowel adhesion's started up after eating dinner. I have been having problems with my adhesion's a lot the last few weeks. I managed to get the pain under control with buscopan and a huge pint full of peppermint tea. I was lucky sometimes it refuses to settle and just gets worse and worse until I am on the verge of passing out. Then it just tails off as quickly as it started. 

Adhesion pain is one of the pains that will immediately stop me doing something. It feels like someone is attempting to remove my intestines through my belly button. It is a sharp pain the comes in waves. So the respite can be seconds or minutes before the next wave hits. Some days it starts as soon as I take my medication in the morning and everything I eat or drink that day will be followed by the pain. Other times I will be fine all day then in the evening I will end up screaming in pain due to it starting up out of nowhere. I can go months without experiencing this pain and yet at other times everything I eat and drink for weeks on end is an ordeal. I am in one of those phases at the moment. Yet if you were to look at my Myasthenia Kid page on Facebook or my personal news feed there would be no mention of it. Because although it really fucking hurts it is a pain I have lived with since I was about 5 years old. 

What really upsets me when I am struggling with adhesion pain is when people who should really know better say something like "are you sure it's not trapped wind as that can be painful"...my standard reply to that is "how many people do you know have fainted from trapped wind?" or " how many people have ended up having major surgery due to adhesion pain?" That usually shuts them up. But it is incredibly hurtful to anyone suffering pain to be so casually dismissed as having something that yes can cause pain offered up as an explanation with the implied suggestion that you are making a meal of things or are a drama queen. I do often wonder why people do that, if someone broke their leg and were in pain I wouldn't suggest they had stubbed their toe. Just because you can't see my pain or have never felt it, doesn't mean it doesn't exist.

Also two people can have the same condition, it doesn't mean their levels of pain are the same or that the condition will follow the same path. Everyone's journey is different. Some people have a high pain tolerance and what they can endure would have others out cold. I know people in the EDS community that have endured root canal treatment without any anaesthesia because it doesn't work on them. That has me sweating just thinking about it. I like to think I have a reasonably high pain threshold except when it comes to my mouth. I have gone through the removal of the side of my big toe nail without pain relief, I have had a lumbar puncture when my local anaesthetic has worn off and pretended it hadn't. I have run company inductions ( when I was working ) with adhesion pain that had me crying in the toilets every time I left the room when a video was being played. I looked fine when I was doing the induction even though I felt as if I was going to faint.

I get sick and tired with the majority of peoples idea that pain somehow shows on a persons face. I have seen summing up by judges in disability cases saying that the person is showing no signs of pain or they have been seen laughing and joking so the pain can't be that bad. Up until my pain hits a 8 you will find me cracking jokes, after that I start getting cranky and grumpy. When my mood changes with pain you know it has got bad.

We need as a society to stop judging people, stop trying to think because we have had that medical complaint that we know all about it, everyone experiences things differently. By minimising it or not believing them we take away their voice. As it is so many of us are already battling the medical profession to take our pain seriously, we don't need to be battling friends and family as well.

Even when I am in horrendous pain he makes me smile.

https://www.health.harvard.edu/blog/chronic-pain-the-invisible-disability-2017042811360

http://nationalpainreport.com/future-doctors-unprepared-manage-pain-8822008.html

I hate 2020

I hate 2020 with a passion not just for Covid-19 and not being able to see anyone but I also hate it because it has been a year of non stop health problems. It is driving me insane and I am starting to feel that "normal people" / "well people" or even people that don't know me that well are thinking that I am either a) exaggerating the impact on me or b) I'm attention seeking. I rarely say much on social media about my health due to this. I am probably more honest on Instagram than I am anywhere. But a few times i have mentioned health issues on my own account on Facebook and now I am left doubting myself, worrying that people will think awful things about me. Believe me if I wanted attention there are a million and one other ways I could get it, being sick wouldn't be the one I would use!

So this year I am struggling with Migraines, Menopause ( I am just 4 months away from officially being in it although technically I could have been in it at any point in the last 5 years, with the pill stopping my period I can only properly count from last December), bowel adhesion's, ptosis and now my absolute favourite my CSF leak is back. I've had two good, well reasonable years with minimal symptoms. My symptoms when they have shown up have been in the evening with a dull headache and light sensitivity. Suddenly out of the blue last Thursday, my head started hurting and when you have had a spinal fluid leak you know that headache there is no confusion, the pain is like nothing else.

To describe a CSF leak headache is difficult, purely because there is really nothing else in the world that feels like it other than a post lumbar puncture headache or meningitis. I am extremely lucky at the moment that it is mild, strong enough to have me lying flat but not hugging the toilet bowl waiting for death. I was on my embroidery machine when I lent forward as I moved back my brain felt like it had been slammed between two bricks . Then my eyes were struggling to cope with the LED lights on the machine. I finished up as quickly as I could and then lay down on the sofa. Slowly over the space of an hour the pain eased. Although that was a good thing, it also chilled me to the bone as only a CSF leak headache eases so quickly on lying down. So my worst fears had been confirmed.

When Jay got home from work I spoke to him about it. He replied with "well don't panic just yet you get days where it plays up more than ever". Whilst he was right , this was different, this was stronger than it has been before. I could hardly blame him for trying to be optimistic maybe I would have been had I not already suffered two migraines that week and forgotten to write a blog post. It hadn't been a good week and now it was getting worse. I replied that yes he was probably right and maybe a good nights sleep would help. I really hoped that it would be but I knew in my heart that it wouldn't.

On waking up on Friday morning, I didn't get the electric shock like feeling like I would back in 2016 when it was at it worst. I managed several hours upright before the pain started. I am afraid I pushed it and stayed up longer than I should have done. I did exactly the same on Saturday, staying upright and not resting like I should have done. I don't know why I did it. Probably I was in denial and I was determined I wasn't going to let a "little" thing like a leak get the better of me. There were things I wanted to do, I refused to go back to the dark place I was in, during 2016. 

However health problems don't work that way, when things are bad you can't pretend they aren't happening. There is no distracting yourself from the pain when you have a CSF leak as the longer you try to ignore it the worse it gets and it wont stop until you lie down. If you push it too far eve lying down won't stop it. From Friday I had increased my salt intake upping my salt tablets back to 10 a day, I had also increased my caffeine intake. Both caffeine and salt increase CSF production.

With the Menopause involved this time increasing caffeine has the added bonus of triggering hot flushes. The more caffeine I consume the worse the hot flushes are getting. Which is just fucking fantastic as caffeine is the only thing that helps quite quickly. So I spend the whole time stripping off due to getting overheated and then no sooner has the flush started I am then freezing cold. Hormones have a lot to answer for.

By Sunday I had completely blown it, my head felt like it was in a vice my eyeballs felt like they had been set on fire every time I looked at my phone, used my laptop or watched the TV. I ended up spending all day lying down either in bed or on the sofa. But as like in 2016 and 2018 ( my first re-occurrence of the leak), my back due to EDS wouldn't let me do more than 12 hours flat. I felt so down about the pain being so bad and I really felt like maybe I had been an idiot fighting against it for three days . 

Thankfully 24 hours of lying flat has got it to a better place but I am still having to lie down much more than I want to. I managed 4 hours upright on Monday and 3 hours on Tuesday before lying down.  I was much more careful on Tuesday ( today) as dog training is re-starting . With it being held in the evening which is my worst time for the head pain, I am having to rest a lot to ensure that I don't end up having to battle through the pain whilst there. 

To add a little variety into the mix at 6.50am I woke up in agony with bowel adhesion pain. I keep getting bouts of it out of no where. I ended up having to wake Jay up so he could get me a drink and a hot water bottle as I couldn't move without making the pain worse. I took some Buscopan, Oramorph and thought there would be no way I would get back to sleep and then the next thing I knew it was 9am and Dembe was snuggled up beside me. I can't work out what the hell is going on with this year. It is exhausting me with all the plot twists. If my life was a TV drama most people would be complaining it was unbelievable, no one is that unlucky....I've also lost my hospital consultant as the health authority he works for has decided that he is not allowed to see patients outside his catchment area. The hospital I used to go to before him, has no PoTs clinic at all as the consultant has retired. So basically if you are outside Plymouth you have been thrown ti the wolves.

But apparently my health needs no consultant input, as I am such an easy patient to manage! I hate 2020!

Face masks

A few weeks ago I helped the local NHS hospital by altering some surgical masks for them that had come in but the elastic ear loops were too big. This led to a few of my friends asking if I would be making face masks or would I make them some face masks for them or their friends and family. I know the jury is out on the use of face masks. This post isn't about that, there are research papers that are for and against the use of face masks by the general population. I think we can all agree that "home made" face masks when worn provide protection to other people more than the wearer - which is why many countries have adopted  the wearing of face masks so that they can all protect each other from Covid-19 and other nasties.

Initially I was very much in the camp of home made masks are bad. That they provided a false sense of security and that by having poor mask etiquette that they could cause more harm than good - if someone continually touches the front of the mask when wearing it and doesn't wash their hands after they are capable of spreading their germs far and wide on every surface they touch. Since then there have been articles in The Guardian,  The New York Times that have shown even home made masks when constructed from the right materials can offer a level of protection that hadn't been anticipated. Add in a filter to those masks - made of an unwoven material or a special mask filter ( you can buy at various oulets) they can provide as much protection as the surgical masks I was altering the other day. A link to the New York Times article can be found here.  The Daily Mail did an article -here The Guardians Article can be found here. So I am now very much of the opinion that yes we should all be wearing face masks of some description when out in public to help protect each other.

So for the last 20 days when physically able I have been making masks for friends and family to wear. All I have asked for is the cost of materials, being on a tight budget I can't afford to be giving away material, elastic and pipe cleaners etc as much as I may wish too. With Mr Myasthenia kid at home, he has been able to keep Dembe entertained and do the chores I would normally push myself to do that would wipe out my energy reserves. Even with him doing that I have had a couple of days in that 3 week period where I have crashed hard just due to pushing myself too hard for too long in an effort to keep people supplied with masks and not letting anyone down. I am on an enforced break now as I have run out of elastic - I thought I had ordered enough but apparently not! I am awaiting fresh supplies. 

To be honest I am quite glad for the break, I am so tired mentally and physically it hasn't been until I have stopped that I have realised how far past my reserves I have got. I always find it amazing how knackered I can be doing nothing ( but obviously I am not doing nothing as I am taking care of myself. I just judge myself way too harshly and think I should be as active as the next person even when in reality I know that is an impossibility ). There have been evenings when I have been so tired that I am unable to form a coherent sentence or stand up straight. The rest was long over due.

For my mask pattern I used this Youtube tutorial

Mr Myasthenia Kid has been helping me with cutting, pressing , folding pipe cleaners for the nose bands, going to the post office etc All the things that can take me more time than an able bodied person and things that I can't do such as a post office run. Without his help and support I would never have been able to make the number of masks I have. 

I have been running on adrenaline for days, I knew I had. Last weekend I was supposed to be taking some time off for sewing but instead I started several other projects. Today (Tuesday  21st April ) is the first time I have sat and just done nothing. Everything is hurting and I feel zombie tired. Which is why I tend to keep pushing and pushing because I know how incapacitating the crash will be. I have always been a boom and bust merchant. Plus keeping busy stops me worrying about Covid-19 and what would happen if either of us got it. 

So due to my lack of elastic I have had to have a day off and it feels strange. I'm so tired though it was very clear that I needed it. I did manage to get Jay to help me highlight my hair as I am having real problems lifting my arms above my head. Within seconds of doing it I am getting awful pain in my shoulder joints. Normally I would battle on through but it is just too sore for that and I am having to put my arms down. He has done a good job and now my roots look far less obvious than they did previously.

I did have a lovely surprise this morning finding out that Natasha McCarty from Natasha Makes was sending me a gift after hearing about my run in with a pin cushion on Saturday!

On Saturday when I was busy making a baby bib for a friends new baby, I didn't notice that I had knocked my pin cushion onto the floor. It had gone pin head side down leaving the sharp ends pointing up but hidden by the pin cushion. I use this particular pin cushion as it has sentimental value to me. It was my late paternal grandmothers and I use a lot of her old sewing stuff on a daily basis. It was only when I got up from my sewing machine and I removed my foot from the pedal, that I placed my foot on top of the pin cushion ( I was wearing socks only) and put all my weight through that foot to stand up. To say the air was blue would be an understatement! It took me ages to get all the pins out of my foot as there were around 20 or so on the cushion. I yelped and cried, there was blood and tears. Later when I looked at my sock I realised that the blood had come right through . 3 days on and the sole of my foot is still a little sore, not something I ever want to repeat, especially as a long time ago I stood on a darning needle and had to go to the local minor injuries unit to get it removed whilst using gas and air! I will be making the pin cushion as soon as it arrives and I can't thank Natasha enough for that. 

Dembe modelling my creations from last weekend!

So for now I am putting my feet up and allowing myself to chill out for a few days!

I am the face of invisible illness

On Saturday I posted this photo to my social media feeds. I had my Christmas jumper on as we were getting ready to take Dembe down to meet Santa Paws. 

Now this blog post is not having a go at anyone, it is just pointing out what people interpreted from the photo and what was actually going on. On posting I had a few comments stating how well I looked and that people hoped I was having a good day. They were really nice comments / compliments but the truth was I was in 7/10 pain with my joints ( that only eased up a little when sat perfectly still) and every so often I had a pain in my abdomen that felt like I was being stabbed. It just goes to show when other people think you look well there maybe a whole host of things that the few seconds in front of the camera didn't show.

I am the face of invisible illness, unless I have ptosis or bruising / cuts on my face most people on seeing this photo wouldn't know that I have been sick for the last 12 years. That I gave up my career due to being off work so much that I was ill-health retired. I don't think I look very well at all in this photo. Yes I have some makeup on but I look as white as a sheet. To me I look shattered, I am putting a brave face on because all week we have looked forward to seeing Santa Paws and there was no way that I wasn't going to accompany Jay and Dembe on this trip. I didn't even tell Jay until we got home how much pain I was in.

When people commented that I looked well, I just said thank you. I didn't want to have to say "well I may look ok to you but my pelvis, hips, knees and lower back all feel like they have been replaced with metal pikes and are grinding against the joints". People ( many of my friends have invisible illnesses so get this) see a photo and decided that actually you can't be as sick as you say you are. They are incredulous that I would drag myself out of the house when in as much pain as I was. I do it not because I am some kind of hero or that I am attempting to prove some kind of point, I do it because I want a life. I want to be able to do things with Jay and Dembe. Jay only gets two days off a week so if we don't do stuff on those days then I don't get to go out until the following week, it is as simple as that. Unless I was totally incapacitated I was seeing Santa Paws and getting Dembe's photo taken. 

The problem with invisible illness is precisely that it is invisible. That means there are no tell tale signs that you can see that show that my autonomic nervous system is wonky, that I have Ehlers Danlos Syndrome or a host of other medical conditions that have come along for the ride. There are no neon signs above my head pointing out to the general public what is wrong with me. It isn't just me that has to deal with not looking sick when they have a chronic health condition there are just so many of us who are fighting battles with our own bodies that most people have no clue about. It is exhausting and at times it feels like it is a constant battle to get people to understand or believe how much I am impacted by my medical conditions.

I knew why my joints were so bad on Saturday / Sunday / Monday and it was to do with the changes in air pressure with a storm approaching the UK. I spoke to another friend who has arthritis in her hips, on Saturday  and she was in pain as well due to the changes in air pressure. We laughed that we were so bloody predictable. I should imagine most of my chronically sick friends were also struggling with the increase in joint pain despite looking fabulous.

Our visit to see Santa Paws was thankfully very short, we were in and out of the shop in less than ten minutes. All in all I was probably only out of the house for a maximum of half an hour. As soon as we got home I was sat on my electric heated throw to try and provide some relief from the pain in my hips and knees because I was maxed out on painkillers and they weren't doing anything at all. When my pain is related to air pressure pain killers just don't work. The only thing that does is the application of heat, it won't get rid of the pain completely but it will drop it down enough to stop me wanting to cry with it. 

Dembe had some wonderful photos taken.

He was a good boy and sat still for his photos. He does love a good face rub or an ear scrunch so Santa Paws hit the spot! 

Despite the pain the trip out was more than worth it when we looked at our phones and saw the photos we had captured. The bottom photo is the official photo from the shop that they emailed us. Even if I was in that much pain again I would still go out and get the photos done. Sometimes you just have to keep pushing so that you can get out of the house. I know for me there are times when I can't get out of bed, the pain / exhaustion is just too much. I was lucky it was a day when I could push though. I would have been gutted if it had been a day when I couldn't and we had missed this opportunity.

What the photo doesn't show is from the time we got home ( around 10.30am) until 3.30pm I did nothing other than sit on my heated throw. I only moved when I went to the toilet. Jay got me my drinks and something to eat. I stayed in my little corner to recharge my batteries and to attempt to get the pain under control. A photograph doesn't show you anything other than those few nano seconds it captured when it was taken. I wish more people understood that.

I am the face of invisible illness.

Balancing Act neck pain v embroidery machine

In last weeks blog post I told you all about my new toy, my embroidery machine. I've had it for 9 days (Tuesday) and I was very well-behaved last week. I had a quick play on Tuesday and then knuckled down to finishing off a whole heap of half-finished projects. I really dislike having incomplete work loitering and taking up space. Last week I had part made soft toys hanging around - the body parts of 15 toys to be exact and some part made Christmas stockings, along with three gnomes. I did have a really good crack at them and managed to clear all the owls, gnomes, Christmas stockings and two foxes. However one of the foxes still has his brains *stuffing* exposed as my hands have been too painful to attempt to close the turning gap. My hands are so sore this evening I am having to write my blog post using my speech to text function, which is fun!

My neck has at times been horrifically painful. Now I know how easy it is to exaggerate pain. People bandy around the word agony at the drop of a hat but still manage to get on with day-to-day living. When I say agony I mean no painkillers are touching it, my rib cage feels like it's collapsing inwards, I want to puke and I can't move very much. It isn't like this all the time thank goodness but it can start within seconds of sitting at a table or doing anything that involves lifting my arms away from my sides. The only thing that helps is putting on my soft collar and heat. The problem with heat though is that it will trigger a hot flush or can make me feel faint. I've found that when it's at its worst diazepam helps as it tends to trigger muscle spasms. As does gin but I don't like drinking every day and I have to keep it to the bare minimum.

I thought the embroidery machine maybe a way of being creative without triggering the neck pain...I was wrong. Sitting in any chair where my back is not properly supported, is a massive trigger. I don't tend to get the pain when sat on the sofa because I am not sat bolt upright. I am now waking up with the pain during the night, which means whilst sleeping something is slipping out of alignment. When this happens the only thing I can do is put my soft collar on for a few hours and hope that its enough to work as along with the neck pain I get a thumping headache. I do thankfully have a doctors appointment at the end of this month. I must have blood tests next week as the doctor was concerned that I possibly have vitamin deficiencies which are causing the pins and needles in my arms / hands / legs and face. However as a soft collar gets rid of all my problems I'd hazard a guess that my neck is unstable and this is the problem. Quite common in people with EDS but a nightmare to get diagnosed in the UK.

I had to limit my sewing to just short bursts with lots of breaks. Which meant I didn't feel very productive at all during the week. I did manage to wait until Sunday before I played on my embroidery machine again.

Saturday my neck and back was awful so I spent the afternoon looking on my chromebook for free embroidery patterns. I downloaded quite a few. I also found on Etsy two really lovely Unicorn patterns. One cost me a whopping 87p! and the other £1.50. I was so proud of myself using my USB port adaptor as my new chromebook has a micro USB port, ( I've had to upgrade my chromebook as my mark one chromebook can't transfer data between a USB stick and the chromebook or vice versa. It can read them you just can't do anything with it, not very good when you have an embroidery machine that you can use downloaded patterns on). So on Sunday I decided I would give the USB stick a go on my embroidery machine. To my delight the patterns showed up straight away. I had been panicking that maybe I would have to format the USB sticks for them to be used by the embroidery machine but it all worked fine.

I decided I would try out the Unicorn patterns on some face cloths that I had bought as a job lot from Amazon. I already had some Madeira Avalon Film wash away stabiliser, so it was just a case of setting up the hoop - face cloth then stabiliser laid on top to stop the stitches sinking into the pile. Then place it in the hoop ensuring its wrinkle free and as taut as possible. This took me several attempts, purely as I just wasn't feeling very confident with what I had done. The first one I messed up as I managed to sew the top right hand corner of the washcloth to the back of the design. I had to cut it out of the hoop! Apparently this is a common mistake so I didn't feel so bad. The second one however came out perfectly.

I also managed to centre it on the wash cloth perfectly.

I did the second one later on in the day. When I started it I hadn't realised there were 21 thread changes. The first Unicorn had been 10, so a massive difference. I loved the small details of the flowers and leaves which you can't really see in the photo. Again I managed to centre this one properly as well. So these will be Christmas gifts. The stabiliser washes away. I cut off the excess as I will be able to use that on small bits of embroidery and then put both flannels in lukewarm water where it just vanishes. I put them both in the washing machine to ensure all traces of stabiliser had gone.

On Monday afternoon I had a quick play as I fancied seeing what the redwork would look like. 

It's not a good photo and to be honest I am not happy with it. The tension is out or I have threaded the machine poorly as bobbin fill has come to the surface so there are lots of little white dots all throughout the redwork. Mr Myasthenia Kid wants to frame it and take it into work for his noticeboard. So I will cut it down and run a zig zag stitch around the edge so it doesn't fray.

Today I had a go at this Christmas Wreath. The wreath came out beautifully but the "Merry Christmas" has come out terribly. Again either the tension was off or I had threaded the machine poorly. It's all  a learning process. I have spent a bit of time this evening looking through the manual and found out lots of things I should have known!

I am really enjoying using the machine and learning all about it. The patterns it comes loaded with are really stunning. It's only the unicorns that I have bought and a dear friend on instagram lent me some USB sticks with lots of designs on to copy.

So if I can get a balance between my neck pain and time that I can use my machines I will be happy!

Human Barometer

We often joke in the EDS community that we are the human equivalents of

Barometers. Any sudden changes in air pressure and you’ll find us suffering

with a myriad of problems such as migraines, excessive joint subluxations

(partial dislocations), dislocations, joint and muscle pain. This week I feel

like I have had them all.

Monday started with a bang, I felt like someone had smashed me in the

face with a shovel. This lead to me spending most of the morning lying

in a darkened room. Until I suddenly had a brain wave and decided to see

if putting a soft neck collar on would help at all. I have always held a deep

suspicion that my migraines are triggered by my neck being hypermobile,

I get a lot of pain and stiffness in my neck overnight. I always wake up with

a migraine, very rarely do they start when I am up and about during the day.

Within minutes of putting the collar on my head pain had reduced by half.

Within two hours I was pain free but exhausted and still feeling sick.

However anything was better than having the head pain.

Tuesday started on waking with a gnawing pain in my coccyx - right between

my bum cheeks to be honest, hence why there are no photos! I have had

massive problems with my coccyx this year after slipping on the snow and

ice back in March. At the time I was much more worried about my head as

I managed to crack it on the back door step. The lasting injury has been to

my coccyx, which has resulted in me having to buy special cushions to sit on

and to lie down in the lounge whenever I can to take the pressure off. I've

lost 2 ½ stone over the year and you’d think that my joint pain would be getting

easier but it isn't. The coccyx pain is very uncomfortable, Tuesday it joined in

with severe lower back pain which lead to me giving up and going to bed a

4pm. Only after applying my Tens machine for 4 hours did I have any notion

of relief. It really was exceptionally painful and made me feel sick. No matter

what pain medications I took the pain remained causing my buttocks and the

backs of my thighs to spasm. I will be honest I really didn’t know what on earth

to do with myself. It wasn’t even particularly stormy here yesterday just a bit

gusty but obviously the weather and the air pressure were drastically

different to the stable weather - but way too hot in the summer.

Today (Wednesday) the UK is being battered by another storm and my body

feels like it spent the night being battered by a shovel. Since waking various

parts of my body have been covered with a hot water bottles, with very little

effect other than to make me sweat a lot as despite the fact the weather is

very windy outside the temperature is very warm.My body is overheating

constantly at the moment which is leading to me dripping with sweat at the

drop of a hat. Either that or I have hot the menopause! So what hurts today?

Today as most days I have pain in my lower spine and coccyx, my fingers are

swollen, stiff and sore. My ribs feel like someone decided to attack me with

a baseball bat whilst I slept and the soles of my feet feel like I’ve been hit with

a with a baseball bat whilst I slept and the soles of my feet feel like I’ve been

hit with a piece of 2 by 4 ( wood ). Other than that, I am groggy as hell with the

constant waking up last night to take more pain relief. This is not a good day

but I have been expecting a run of bad days after having a reasonable week

last week. It’s the way it goes plus add in a few storms and my body reacts

badly to the change in air pressure.

I forgot to mention that my shoulders are slipping in and out of  their sockets,

making a terrific crunching sound as they do. Today nothing other than just

surviving will be done. When I say just surviving I mean lying on the sofa hoping

at some point the pain relief I have taken kicks in. There will be no enjoying myself,

doing things that I like to do. It will be a case of just riding it out. That’s the way this chronic illness lark works. I may have a run of a few good days but they will be

followed by several if not more bad. Which is why when its good ( when I say

good I mean better than a bad day) I tend to cram as much in as I can.

I’m sick of this pain, especially when it’s like this and no painkillers touch it.

It’s not a pain where you scream and shout it’s a nonstop constant bone gnawing

pain that escalates as the day progresses. Sometimes it takes my breath away,

it makes me miserable and snappy. I hate the way it can completely change

my personality from laid back and kind to nasty and angry at the world.

Unfortunately those closest to me bear the brunt of it, with me losing my

temper very easily. A technique I have learnt to avoid me lashing out is to

just go quiet and not speak. That way I can be horrible to those I love the

most.

Thursday brings more storms and a trip to see my hospital consultant which

is more than an hour away by car. It’s a crack of dawn appointment as well

so 90 minutes after this blog post is published I will be on the road. I will have

had to get up at around 4am so that I can pace myself whilst getting washed

and dressed. I am not looking forward to using my wheelchair as sitting upright

at the moment is so painful, added in the 2 hour car journey (there and back)

and I will be wracked with pain….again.

I do have a lot to discuss with my consultant, I haven't seen him since March,

it’s a necessary evil - he's not evil he’s lovely, just the journey is torturous. I

have developed numerous issues since I saw him last and I need to get to

the bottomof them. One of them is the possibility that I have got Sjogren's

Syndrome ( I have had dry eyes for years but the eye drops are no longer

working, my mouth is dry so I am getting numerous cavities and my tongue

is sticking to the roof of my mouth when I talk). I need this to be looked

at as my eyes are just so painful and with my pathological hatred of the

Dentist I need the cavities to stop. More information on Sjogrens Syndrome

This is such a down beat post and for that I am sorry. I had such a lovely

week last week seeing friends and managing to make some bits and pieces.

The Christmas wreaths had been half made since August so I managed to

finish those by adding hanging loops and bows.

I also made a number of Travis bags.

I am really starting to hate blogger if you are too please visit my WordPress

site at www.themyastheniakid.com. I write my posts in Google documents,

yet when I transfer them to blogger the text is wider than the page so hence

why the writing is weirdly placed. It turns my text grey for no reason at all and

this week has double spaced the last couple of paragraphs. Despite it not looking

like this on the page where I transfer my blog post over to. Blogger is just shite and

I am getting very close to no longer posting here and moving everything over

to my WordPress platform.