Side Effects

Some weeks I really struggle to come up with a topic on which to blog about. This is one of those weeks. In fact it was quite by accident that I remembered this morning that I hadn’t written this week’s blog post which is due tomorrow. Nothing like an unwritten blog post for you to find numerous jobs to do instead of writing! I have practically had to chain myself to the Chromebook so that something, anything gets written. Unfortunately this weeks struggle is due to my medication being altered.

The new dose of antidepressants has knocked me for 6, yes my mood has improved greatly but I am just exhausted 100% of the time. When I am up during the day I feel like I am working through a haze best described like you had a couple of glasses of wine with lunch except its 8am and you haven’t been drinking. I may get a couple of hours in the middle of the day where I don’t feel so out of it but then it quickly returns. That isn’t the only side effect I am having.

Mirtazapine is known that it can play havoc with a person’s appetite. On 30mg a night Mirtazapine did nothing to my appetite it neither increased it or decreased it. Now I am on 45mg a night and I am hungry all day every day. Its like being on steroids all over again. Despite being on my restricted calorie diet and the fact that I shouldn’t be feeling hungry at all, I am battling daily to stick with it. The hunger hasn’t subsided at all and thankfully although I haven’t put on any weight, it isn’t nice feeling hungry all the time and knowing that you can’t eat because if you do, you’ll be the size of a whale very quickly.

It’s also making my dry mouth worse. I already drink an excessive amount day and night due to a faulty hypothalamus. Something I was born with, but it is getting ridiculous as the amount I am drinking through the night means hourly to half hourly I am getting up to have a wee. Lack of sleep or broken sleep is not helping the feeling of having to push myself through a fog to function. In fact as I am writing this I am realising that although my mood has improved it is coming at too higher price. I haven’t even told you about the worst symptom that the increase of medication has caused and that is constipation – there I said it, I’m full of shite!!

My bowels have always been healthy and regular. The only times I have ever had problems going to the toilet have been due to codeine, one dose of that and I am horrendously constipated or when my bladder and bowel decide to shut down for 24 hours. So I was shocked to discover that a well-known side effect of Mirtazapine is constipation. I have had enough to be honest. After two days of struggling to go and feeling like the process was more akin to giving birth than having a dump I decided I better take some laxatives. Again something I have rarely taken in my life. Morphine has no impact on my bowels – which causes all my doctors much consternation because apparently that’s just not normal. But it’s true I have no problems going at all. But I am in agony due to the constipation the increased dose of Mirtazapine has caused. 

Of course I could have just eaten an excessive amount of Sula drops – the constipation would have been over much more quickly. Instead last night I took a mega dose of Senna. Now I have been 3 times but I am still in pain. I managed to go without any problems but I just feel like I am still full of shite and it is making me feel well crappy to be honest. 

Due to having a history of bowel adhesion’s and having to have them operated on I don’t tolerate stomach pain very well. It is a pain that really gets to me quite quickly. Maybe I am over sensitive to it but it is not something I am prepared to put up with. Taking senna every night is not an option as all it does is cause my bowel to be overactive for the next 24 hours and causes me adhesion pain. So the only solution to the issue is to stop taking the 45mg dose and drop back to the 30mg one.  I will obviously monitor how my mood is doing and see the doctor again if I need to but feeling better mentally is coming at too higher price and too much pain. I have been on the increased dose for over two weeks and if anything the side effects are getting worse and not settling. 

Another thing I have noticed is that it has taken away my drive to sew or embroider. I haven’t really wanted to do anything and I am having to force myself to do anything at all creative or to do something other than just sit in front of the TV for hours at a time. Most of the time I can’t even remember what I have been doing. It is a crazy situation to be in.

With all medications you have to weigh up the benefits and risks. The risks to me is that I am just not feeling like me on the increased dose. I don’t like feeling like this. Maybe what I have taken has been enough to get me over this sticky patch. I will soon find out but I know I am not willing to persevere with side effects that are this bad on so many levels.

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Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these “spasms” in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don’t have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don’t have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago….. yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon… you know the tablet that doesn’t work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. It’s the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon (also known as pyridostigmine bromide). It raises standing blood pressure, I can’t say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn’t help the breathing or the ptosis. Those days I stay in bed and pray that I don’t need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don’t do hospitals anymore because I always get treated like I am a time waster who “thinks” I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that – even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder – notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 – yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week – more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can’t get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It’s just as well as I have to be honest I really wasn’t coping, I was doing a great job of masking it and some people can’t get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn’t been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn’t get off the phone quick enough, despite that she still managed to bang on about using meditation. I pointed out it doesn’t work for me and leaves me feeling worse.

I do a guided meditation when I can’t sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn’t funny its a genuine concern, when depression isn’t taken seriously and the problem here was a locum gp who wasn’t aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won’t treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don’t want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don’t I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can’t push me.

So no the MG symptoms haven’t disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

Solace in creativity

Last week I wrote of my guilt at being happy, although I received lots of supportive comments, my emotions are still all over the place. The last week or so I have cried everyday over Mollie, Frankie and Willow. I think that is why I have been trying to occupy every minute of every day lately through some sort of creative endeavour or to get out of the house, so I can’t sit and brood.

I am beyond exhausted, last week Jay was on holiday and we spent the week catching up on jobs that have probably been outstanding for 12-24 months. Obviously I am very limited in what I can do and with Dembe ( our nearly 16 week old yellow Labrador pup) it is very difficult to do things together. We made a massive dent on the list of jobs that need done but as anyone who owns a house will tell you, one job soon multiplies and becomes another 4.

We have sorted out our bathroom, its been in a state of almost done for around 10 years I kid you not. Little jobs needing done but neither of us having the energy or inclination to get it completed. I finally cracked and decided a week before Jays holiday enough was enough and it would get completed. Initially it was just that the grout and silicone sealant would be redone. That however has evolved into the bathroom being redecorated – overdue as I believe it was last done possibly 5 years or more ago. Which then means that before the walls are painted the woodwork gets repainted. So the thing spirals. All because I can’t spend any free time doing nothing because the minute I do the sadness overwhelms me.

I have been working hard on the creative side of things as well. For a while I didn’t want to do anything, I didn’t know if I would ever be able to do anything again. Both days that the dogs health suddenly declined I was sat at my embroidery machine. I blamed myself for not paying them enough attention. To not sew or give myself a  creative outlet was a way of punishing myself. Because as I stated in last week’s post I love to make myself feel guilty.

So I thought I would share my makes with you. I am limited with how much I can type this week as my shoulder (right) is grinding away and popping out, my wrists and fingers are also playing me up. So typing is uncomfortable.

I have been making this one for a friends granddaughter. This will get turned into a cushion at some point over the next few days, depending on when my shoulders and wrists / fingers decide to cooperate.

I’m not happy with either the hedgehog or the sheep as I rushed the hooping and as a result they have puckered. However these two will be turned into cushions for our home and I was desperate to see how this design stitched out.

I love the highland Cows design, this was from the same Etsy seller who designed the sheep and the hedgehog. This one will be a cushion for us. I am toying with putting this design on one of my blank sweatshirts.

 

 

The Charlotte cushion is a Christmas present for my niece – you probably think I am bonkers but I like to work well in advance in case my health suddenly declines. That way I don’t feel stressed out in December trying to make lots of gifts to a deadline of when Jay will drop them down to our relatives.

The owl Cushion – I bought this design around Christmas time. Due to the dogs passing I never got the opportunity to stitch it out. So I had a go a few weeks ago. I am really pleased with how it turned out. 

The Evie cushion was for a friends Granddaughter. This will be the last one I stitch out of this design as it has been poorly digitised. Every time I stitch it out I have problems in the same place. I have invested in a new unicorn design now!

 

 

 

 

 

 

 

 

I made a job lot of doorstops, many of these will be gifted during the year or at Christmas. These doorstops have washable covers as the bottom has an opening that has velcro to fasten it. Inside I have used cat litter ( clean obviously) to weigh it down. I place the cat litter inside a ziplock bag and also use an elastic band so it has two forms of closures to stop any leakage! I enjoyed making these door stops, it made a nice change and was a challenge for me after making so many items the same on the run up to Christmas and with making cushions.

As I haven’t posted a photo of Dembe on here for a few weeks, I thought I would share this with you. 

This is me and the little man. He sleeps every night with his head on my pillow. Most nights his nose is touching my head or face. I love feeling his breath against me. He is such a loving little chap. Without him I’d have never made it through the last 10 weeks.

The guilt at being happy

Those of you who read last week’s blog post will be happy to know there have been no further Sula Drop “incidents” since the one described by last week’s post.

Guilt is something I deal with on a daily basis. I feel guilty about most things. I feel guilty that I can’t do as much as I used to in the house due to my medical conditions. I feel consumed with guilt that our lives haven’t gone the way that we had planned them to go. At the moment I am being eaten up with guilt because for the first time in week’s I feel happy. I worry that people will think that I didn’t love Frankie and Mollie or didn’t love them enough because now I love Dembe.

I catch myself sometimes in a negative cycle of self talk telling myself that it is not possible to love another dog so much already if I truly loved the other dogs. I know that what is amazing amongst human beings is our capacity to love even when in the depths of despair. The love I feel for Dembe is different to the love I had for Travis, for Frankie, for Mollie or for Willow. Each of those dogs I loved differently but with the same intensity. I never felt the guilt of having Frankie and Willow after Travis passed away because they were born in the house, although Frankie was sold and came back to us. So I don’t get why I am struggling with the guilt of having Dembe?

Is the guilt stimulated by the fact we had to go out and buy him from another breeder? Rather than him be born in our spare room? I feel it acutely at times. Just looking at Dembe on occasion will reduce me to tears because looking at him reminds me of what we have lost. 3 dogs in the space of 55 weeks. That is a lot of loss to deal with, on top of the human losses we also suffered. 

I also feel guilty because my anxiety levels have dropped since Mollie and Frankie passed away. I knew that they weren’t long for this world even though you hope in your heart they will last just a little bit longer. Frankie had rapidly declined over the space of the 12 months and I am now pretty sure that the inner ear infection Mollie had in the summer was her first stroke. Purely because the symptoms the day before she passed were exactly the same.  Both dogs were spoilt rotten in the last 12 months of their lives. They really enjoyed themselves. We had hoped Mollie would have a good six months after Frankie passed but it wasn’t to be and that breaks my heart. In the days after Frankie passed I made such a fuss of her, plied her with sausages like they were the elixir of youth. I feel guilty that perhaps I didn’t see how much she was grieving for her son. The vet certainly felt that the grief was a contributing factor in her catastrophic stroke. 

My anxiety levels have dropped also because Frankie was having some quite bad mobility issues. At night I would never sleep very deeply because I was always listening out for him in case he fell or he couldn’t manage getting back upstairs after going down for a drink or to let himself out into the garden. Because Dembe is younger he doesn’t get to roam around the house at night or even during the day. He can’t yet manage the stairs so he is confined to my room at night by a baby gate.

I would talk about the day that we wouldn’t have the Weimaraner’s anymore and it always seemed like some mythical date in the future. Even though I could see them ageing and losing condition I must’ve practised cognitive dissonance because on another level I couldn’t believe we would ever lose them. They would live forever in our little bubble, being loved and returning that love tenfold.

Now I get anxious about loving Dembe too much in such a short space of time. I still look at him at times and have to remind myself that he is mine. I wouldn’t be without him, he is a devoted pup who loves Jay and I equally. Today at a friend’s place Jay was training Dembe in the garden and Dembe was so totally focused on him. All this little dog wants to do is please us, be loved and be fed the occasional piece of cocktail sausage when he has been a good boy. If we had tried to do the training with the Weims they’d have put two fingers up and walked away. We loved the Weims for that, they were so independent, free thinkers, the hooligans we used to nickname them – in a loving way. The relationship we have with Dembe is so totally different, he lives to please and be told he is a good boy.

He has a lot of traits like the Weims had, he is almost like a mish mash of all their characters. He reminds me a lot of Frankie the way he is such a mummy’s boy, the way he herds me ( nudging the back of my leg with his nose) when following me into another room. The way he has to be with me the majority of the time, although Frankie would have never climbed into the shower with me, Dembe does this frequently. The girls however would regularly poke their heads around the side of the shower when I was in there. Willow was the most adventurous and would come in and have a drink! She was the water baby out of the three, she would run to the pond on the common and dive straight in for a swim. She always looked like a human when she was swimming due to the way she held her head out of the water. I always imagined her with one of those 1970’s  swimming caps covered in flowers. 

I am glad that we decided to change breeds after the Weimaraners.  Weims will always have a special place in my heart, too many years involved with them not to. I have owned 4 plus 18 puppies were bred from Mollie over two litters. Life without them is strange. However my eyes have been opened to the world of Labrador’s now and although I know each dog has a different character, I love Dembe’s character. I can’t get my head around the differences in breeds of dogs. I was quite ignorant before and just thought all dogs were pretty much the same. We have gone from hose pipe / shower averse Weims to a dog we can’t stop getting wet at the slightest opportunity. In the shower no problem I’ll join you mum, got the hosepipe on ? I need to chase that and bite the water. He has us in stitches every day.

I guess guilt is just part of my makeup, I have always been this way. I feel guilty about stuff I haven’t done. I think it comes from a sense of always being in the wrong, even though that is untrue I always felt that way. I always doubt any decisions I make for fear of getting it wrong. Now I am trying to break that habit, I know the guilt is just a stage of grief. I have been through it with every dog I have ever lost. With Travis for years I felt guilty that we had given up on him – despite being told his kidneys were failing and that he had less than 12 weeks to live. I felt the same way about Willow, not noticing how poorly she was quickly enough – neither of us did and the vet told us how stoic our dogs were and didn’t show any signs of illness until at death’s door. I felt guilty after Willow had a closed Pyometra despite taking her to the vets in the preceding weeks saying that there was something wrong with her. I felt the same guilt when she had breast cancer, even though the vet told us he was surprised that we had felt such a small lump.

See how the guilt eats at me. Even when I make the right decisions for my dogs or discover something early the guilt starts that I could have been better, spotted it sooner. It is a pattern I am trying to break but its hard when this has been your thinking pattern for over 40 years.

Although I was terrified of what people would say about us buying  Dembe so soon after Mollie & Frankie passed away, even though I knew it was absolutely necessary to preserve Jay and my sanity. Unless you have lost two dogs within a week you aren’t in a place where you can judge. You never know what you would do until you were in that position. I now no longer care what people say about it. 100% it was the right thing for us. 

Whilst I struggle with the guilt of loving him so much,  I am a work in progress. I am learning to deal with the guilt of being happy again.

Those of a nervous disposition look away now!

** As the title of the post suggests, if you are easily offended by toilet humour, bodily functions, I would skip this week’s post as it’s not for you, it’s an utter shitfest**

As those of you who know me in the real world know, not under the guise of The Myasthenia Kid, I have been dieting like crazy. Last year I lost 3.5 stone and was about half way. I put a lot of weight on in 2016 when I was bedbound for most of the year with the CSF leak. I was so miserable I used food to comfort me. I tried dieting through 2017 but did a pretty poor job. I didn’t properly get going until June 2018. From June until the start of December 2018 I did pretty well and stuck to it. Then there was Christmas and I put on about 5lbs and then when the dogs passed away in quick succession, I put on a further 10lbs self medicating with food and gin. Finally however a week ago I got back on it and in my first week lost 9lbs.

Recently I have been struggling with a sweet tooth mainly in the evenings. I use a food exclusion diet, low carb  and have my doctor’s permission to do. I actually feel better than normal when I am on this diet. However for some reason this time every evening around 7pm I crave something sweet. It is quiet unusual for me as I am mainly a savoury person. I have had to increase my morphine over the last few weeks as my joints have been more painful than normal and have been slipping out of their joints more easily. I know morphine increases do trigger a sweet craving in me. It is something to do with the receptors in the brain. As this had been going on for a while I decided I would buy some old faithful sweets called Sula Drops.

The thing with Sula drops is that you have to be very careful. You can’t eat a lot of them as otherwise they have a rather undesirable effect….they turn into laxatives. Now on the box there is a vague warning about this 

Warning: excessive consumption may lead to a laxative effect

Notice there is no number involved. It doesn’t say eating more than 10 sweets will make your ass explode does it? It doesn’t say what it means by excessive and at what point does the delicious butterscotch sweet that you have been happily sucking on become a weapon of mass or ass destruction?

I have enjoyed Sula drops for years, they make your mouth taste less like the bottom of a budgies cage when you are doing this style diet. I don’t get on with chewing gum as it seems to fill me with wind – I know I am such a lady! So I will admit I was playing fast and loose ( no pun intended) when I started munching on them last night. There are only 14 of these devils in a pack and the night before I had consumed 8 with no laxative effect. The problem was last night I simply forgot to count or rather I began to count and then forgot what number I had got up to. The butterscotch flavour is a pesky little number as imagine a Werthers original but with none of the calories. I find them utterly addictive, only now I really doubt I will ever be able to look at a Sula drop again.

I knew I was in trouble at 11pm last night when my stomach made a horrific gurgling sound. It sounded like litres of water were washing out my intestines. I felt the need to fart so did…obviously it smelt of roses and rainbows….not. It actually smelt so rank I felt a little sick. That did concern me a little. Then beads of sweat began to form on my brow and I realised that I had tipped from sweet not so naughty treat to laxative effect. I giggled after all I had been a bit of a twat letting this happen. Believe me 14 hours on I am no longer laughing. 

On the 3rd trip to the bathroom within 15 minutes I had to pass Dembe ( our new Labrador retriever pup) to Jay to look after as he was getting fractious with me leaving him all the time. I explained to Jay what I had done – he laughed how supportive? I’d have been the same if he had done it.

I sat on the toilet wondering why hospitals don’t use the power of Sula drops rather than picolax to clear the bowels of patients being prepped for a colonoscopy. It was coming out of me like water and showed no signs of stopping. Every time I went to get off the toilet the next thunderous lot would pass out of me. At this point there were no stomach cramps just a intestines that were sloshing around a lot of fluid. I finally made it off the lav to be greeted by my husband on the landing asking me who had died or rather what had died to create the stench that was coming from the bathroom despite copious amounts of “spiced apple” air freshener being deployed. I have to admit by this point ( and lets remind ourselves I was only 15 minutes in to this night of hell) I had lost my sense of humour. I shuffled off back to my room to find the Imodium. Having had upset stomachs before through medication etc I knew that a minimum of 6 tablets would be required for the shit fountain to stop. I took three and found myself back in the bathroom as it seemed drinking to take the tablets appeared to make my intestines churn faster.

My husband taking his life into his hands decided this would be the best opportunity to ask me to lay a rolled up towel at the bottom of the door to keep the stench of death coming from my innards contained within the bathroom.  I can’t remember what I said but it more than likely contained many F words. I knew it stank but at that point I just wanted this white knuckle ride to end. Little did I know that it wouldn’t pass quickly and would still be having it effects on me 14 hours later. 

At 1am I finally managed to drift off to sleep, I had now taken 8 Imodium and it appeared to have stopped the onslaught although my stomach was still making horrendous noises. Every time I took a drink of squash my stomach noises seemed to speed up. When Dembe woke me up at 5am for his breakfast I immediately checked to ensure that I hadn’t shit the bed, as if I had been stupid enough to fart in my sleep it would have been messy. Thankfully I hadn’t but I could feel that my abdomen was distended with an enormous amount of wind, which I was terrified of expelling for obvious reasons. I was only down stairs long enough to get Dembe’s breakfast in his bowl before I had to dash like Usain bolt to the bathroom.

Although the diarrhoea has now pretty much stopped my abdomen is still distended, uncomfortable and full of wind. Jay reckons I have probably lost half a stone (7lbs). I really don’t know where it all came from. If I didn’t feel so drained by it and hadn’t had to avoid taking mestinon all day along with coffee ( as both stimulate the bowel), I might have been thrilled that I have had a proper spring clean. I am just glad that I haven’t had to do anything or go anywhere today. I am hoping that by tomorrow (Wednesday) any last traces of excessive consumption will be gone.

A further two Imodium have been taken today making the total taken to stem the tide 10. If I ever shit again it will be a miracle.

Let my gluttony be a warning to you, never eat more than 8 Sula drops in 24 hours apparently that equals excessive consumption!

The butterscotch ones are the devil in disguise!

Physio v Torture is there a difference?

I wrote back in December that I had gone back to my physio Jane, who is just brilliant. I had been having trouble with a pinched nerve in my neck which was causing areas of numbness, pins & needles and burning sensations. Thankfully working with her has reduced these symptoms massively to the point now where the pain is limited to my neck and I have the proper feeling back in my arm and hand.

So far my physio sessions have been ultrasound treatments and deep tissue massage / manipulation. Whilst deep tissue massage may sound blissful and you have the image of a spa, let me burst that bubble for you. It’s really fucking painful. The evening after treatment is usually spent in a whole world of pain with a humdinger of a headache. Tonight is no different. Although I know that things are improving massively it just seems so unfair that I get so much pain after each session. I know I will be fine by the morning once my overly reactive body has calmed down again but it doesn’t make it any easier.

I spend a lot of the session hovering over the massage table as the pain makes me levitate. Some times when she is working on a certain point initially it will be pain-free but as she increases the pressure she can hear me take a sharp in take of breath. That is the first warning it’s getting sore. After then I tend to try to jump away from her.

My next physio goal is to start some gentle Pilates exercises. Basically my muscle tone is horrendously poor. Its my own fault as I worked so hard on it in 2014 and I let it all go to waste when I developed my spinal fluid leak. A lot of things went to pot then all of which I am working hard to put right – diet went out the window, Pilates and just taking care of myself. I am determined to put this right. Even though I know that initially my core muscles will not be happy, probably none of the muscle groups I will be activating will be but it will help stabilise my joints and support my spine. 

Over this last week I have been having terrible problems with my joints, lots of grinding, subluxations and pain. My muscles have equally been naughty I have had muscle spasms at the drop of a hat. My feet seem to love going into spasm – that is very sore and it tends to take them ages to come out of it. The middle of back where the bra clasp would sit is also going in and out of spasm on a regular basis. I wonder genuinely, if it is to do with the storm the UK has just been battered by as prior to that my pain levels had dropped for the first time in well years. I know we EDSer’s can be sensitive to barometric pressure and its the only thing that is different.

I’ve had to get a yoga mat to perform my exercises on as a little devil disguised as a cute little yellow Labrador decided to use our grey rug in the lounge as a toilet twice … that we know of. So I thought we had just had two weeks of 100% no accidents and maybe he had been using the grey rug? The house certainly wasn’t smelling of dog pee. We were going to replace the rug anyway, it now just been removed with no replacement planned until the house training is for sure 100%.

My physio had me run through some extra exercise treats she wants me to attempt… I don’t think I will be able to take a deep breath tomorrow let alone belly laugh. I am always amazed at what tiny Pilates movements can do. I know that they are brilliantly effective but I also know due to the current state of my spasmodic muscles I am going to have to go very gently.

Even with the current state of play with my muscles and their desire to go into spasm with no warning, I have managed to get back to some creative work. I have done quite a bit on the embroidery machine, I have used my overlocker and my sewing machine. I managed to make 5 cushion covers last week. All of which I am very pleased with, there are little things that I could have done better but that is me being stupidly hard on myself.

After sharing with friends the birth announcement cushion I had made for a friend of ours, two people asked me to make them for as well. This was a nice surprise as after not sewing ( properly) for over a month and having no desire to I had lost my confidence.

I also made two book lovers cushion covers, these will be gifted later on in the year.

This one will also be gifted later this year.

This week I wanted to see how this design would stitch out, I bought it in the sale but everything turned to rat shit and I never got an opportunity. As soon as the urge to create came back I really wanted to see how this design would come out.

I still haven’t decided If I am going to frame this or make it into a cushion cover. It took an age to stitch out over an hour and a half, just under 60k stitches and 21 thread changes. I was exhausted by the time it finished and in pain. My muscles are so weak currently that I can’t support myself sitting up for any length of the time.

I am feeling happier at the moment, although I ended up crying over Mollie and Frankie today, it came out of nowhere. I feel like me again after being under a huge black cloud for weeks. 

Now to take some pain killers thank goodness I am not back at the torture chamber, I mean physio centre for 4 weeks as my lady is going skiing.

Getting back to normal, if there is such a thing.

Around two days after I wrote my last post “Washout” I ended up contacting my doctor and was prescribed antibiotics. I had been running a temperature for around a week and I just wasn’t feeling any better. 

 
Wednesday morning (30th January) I woke up in the middle of the night feeling like someone had smacked me in the face with a shovel. My sinuses hurt, my teeth hurt and I felt violently sick. As I quite often get migraines like this I decided to try to get back to sleep, it didn’t work. As the morning wore on the pain was increasing where as my migraine attacks last 12 hours at the same intensity I had to concede that this wasn’t a migraine, I had sinusitis and probably a chest infection. When I described my symptoms to the gp she agreed and I was given a 7 day course for amoxicillan. No wonder I had been feeling so awful.
 
After 3 days on the antibiotics I was feeling almost human again. However as usual the antibiotics did a number on my innards which required me to take at least 6 imodium a day. The diarrhoea was so bad it left me feeling drained and triggered off very painful spasms causing me then to have bowel adhesion pain. I stuck with them until the end of day 5, after that I just couldn’t do it anymore. 
 
I could cope with the exhaustion levels if my pain levels hadn’t suddenly just ramped up. Out of nowhere I am back to having extremely cold legs which have to be warmed up by a hot water bottle or by sitting on my electric throw. When going out in the cold and believe me it’s not that cold for this time of year, yesterday it was between 6 and 7 degrees Centigrade, I was in agony with my hands despite having my arthritis gloves on and my legs were aching despite having leggings on under my jeans. I had just gone through a really good period, pain wise and had barely been touching my oramorph which I use for breakthrough pain but as of two days ago, I am taking it every 4 hours when awake to try to knock down the pain levels I am currently experiencing.
 
At the moment there seems to be no happy medium temperature wise. I am either hurting due to the cold or stripping off my layers because I am suddenly boiling hot. So hot that I am sweating. An hour later I am back to freezing again and this cycle repeats itself throughout the day. I wish I knew what I could do to combat it. It’s not like the flushes I was getting before taking the red clover, black cohosh and the sage leaf supplements which have done wonders for my hot flushes. This is a temperature regulation issue. And temperature control is part of the autonomic nervous system. I guess it’s just adding in another element of fun.
 
On a happier note Dembe is settling in very well, you can read about his adventures at www.thedembediaries.com I publish every Monday letting everyone know what he has been up to over the previous week. I don’t know where I would be without him if I am honest. It is exhausting though looking after a puppy when you compare looking after adult dogs who are independent and happy to be left sleeping for most of the day.
 
Dembe is very close to me but I wouldn’t expect any different, he and I are alone together all day ( around 11 hours) bar Jay coming home for 30-40 minutes at lunch time. Dembe loves Jay too, you only have to witness the furious tail wagging when Jay comes through the door to know that. But he is a mummy’s boy at heart. He loves nothing better than curling up at the end of the sofa and sleeping, as long as I am at the other end. 

 
 
 
When I get onto my sewing machine or embroidery machine, he sleeps on the bed I made him in the kitchen. Due to feeling so rotten, not a lot of sewing has gone on. However I did manage to finish this birth announcement cushion, which is a gift for a friend to celebrate the arrival of his daughter. By the time this blog post is published the gifts recipient should have it.
 

 
I am really pleased with the cushion as the feet are from one design and the text is from an inbuilt text on my embroidery machine however I had to get the placement and size of the text right so that the cushion looked balanced. 
 
I used a product called Sarille, which is a type of interlining mainly used on curtains. I saw in various groups lots of suggestions for using wadding behind embroidery designs that were stitch dense and being sewn onto lightweight fabric. I had loads of the Sarille lying around from when I used to do my subscription box. It has given the cushion a nice bit of body at the front and it has also ensure there is minimal puckering. 
 
It’s the first bit of sewing I haven’t had to force myself to do since Frankie and Mollie passed away. For a while there I didn’t know if my sewjo would ever come back or if Dembe would sleep enough for me to manage to get anything done. Jobs are taking me longer as I now tend to wait for Jay to be home before sewing anything. Embroidery is different as I can get up and move away ( when the machine / thread is behaving), so I can keep an eye on Dembe. He is very used to me doing bits of embroidery, he  will lie on his bed in the kitchen and go to sleep. Puppies do sleep a lot although when they are manically running around, chasing their own tails it can seem like they never sleep!
 
I have also managed to get two other bits of embroidery done today, birthday presents for March. I do like working ahead so that I don’t feel under pressure. Whilst I am in the mood to be creative I tend to go for it. Its only in the last few days that I have felt the creative juices starting to flow again. That has as much to do with getting over the infections as it does with dealing with the grief losing the dogs caused. 
 
Its taken 4 weeks for me to feel anywhere near normal and it is still very raw. I am managing to go days without crying where as in the beginning I was lucky if I could go an hour without breaking down. 
 
I am finding it very difficult at the moment to motivate myself to write this blog, mainly because the dogs, our Weimaraners featured in it from the very beginning. They are what kept me sane and kept me going, when it would have been incredibly easy just to give up and not fight anymore. It is taking some getting used to being without them. It’s a new normal and it’s going to take a while to get used to it.