I am a survivor

Well I am still not feeling the blog. I don’t know what’s going on but I am really finding it hard to come up with stuff to write about. I am spending 7 days waiting for inspiration to strike and it just isn’t happening. By Tuesday each week I am in a bit of a panic, I like to try and write on a Tuesday if Jay goes out running errands. If not I will wait until Wednesday morning but I don’t like leaving it until Wednesday as I always panic if I have a migraine or something and no blog post is produced.

At the moment the days are just merging into one. I haven’t seen any of my friends for over a month although I keep in regular contact with some of them. I have come to realise over the last 8 months that some of the people that I thought for there for me, disappeared when Frankie and Mollie passed away.  I understand that everyone has their own lives and families, with their own shit to deal with but it has been a very isolating experience. Some people have made a supreme effort to be present and other well not so much. It’s ok as I have a long memory and will be sure to return the favour when the shit hits the fan in their lives. I didn’t expect to be visited constantly but the occasional text message would have been nice, especially when they know my situation of living alone and Jay working.

Thankfully though I am pretty self sufficient, whilst dealing with my grief, I was juggling a new puppy and attempting to find time to sew / embroider. It hasn’t been easy but Dembe and I have found a new routine that works for us. He is pretty good at entertaining himself whilst I am busy sewing. He always positions himself in a location where he can keep an eye on me and ensure he knows if I have moved. He likes one of three places, the bed by the washing machine, the sofa that looks into the kitchen or out under the gazebo on the bench surrounded by all the cushions. I can’t believe my luck that he doesn’t get bored and then start destroying things. When I have finished sewing he knows that is our time and I will ensure I spend the time playing with him, doing training or just cuddles depending on his energy levels. I have been blessed with a pup that is so very well behaved and so very loving. His favourite spot for sleeping is right beside me on the sofa. This is him right now as I am writing this post.

My life has totally changed this year, I have re-assessed a lot of relationships. I have made the decision that I won’t swim an ocean for people who wouldn’t jump a puddle for me. I have decided that instead of worrying about what everyone is thinking or saying about me behind my back and believe me you’d be surprised the shit I hear being spoken about me by people who should know better, that I shall just carry on living my life and enjoying myself. The best revenge on those sad twats is to enjoy yourself and plaster it all over social media. It totally then fucks up all the fairy tales that they have been telling people for years.

I am also getting out of the house a lot more, this does have to be limited and planned for. I haven’t suddenly magically got better, it is just with one dog things are a lot easier. Especially as Dembe is such a friendly dog and on the whole pretty well behaved, although we have now hit the teenage years and recall seems to be a take it or leave it thing! Fatigue still grinds me down. I like using my energy for things for things that make me happy. So using my mobility scooter on Woodbury Common and getting out with Jay and Dembe has been unbelievably healing and grounding. 

It has been the one thing I have missed most since I got sick. The wheelchair trike although brilliant is an absolute ballache to transport. The wheelchair is fixed framed so that would take up the whole boot and then I would have to juggle the trike attachment with me in the front of the car. Not exactly safe. Then I piled on a load of weight when I developed my CSF leak and was virtually bed bound for a year, then in 2017 and 2018 we suffered a number of bereavements and I tend to self medicate with gin, chocolate and junk food / takeaways. I was 5 stone over the optimum user weight for the trike. So anytime I did try to use it the battery drained in minutes. I’ve been too embarrassed to say that because I allowed myself to get fat as fuck, I haven’t been able to use it. Hopefully now I am back losing weight ( it’s taken me until the last month to feel like I can actually do it) and I am back to 3 stone down, ideally at least another 3 to go so I will be massively under the optimum user weight. The trike will be used in the future as it is more suited to the rough and rugged environment of the common.

I do love my mobility scooter though and it has given me back my independence. It is easily taken apart to it can fit in the back of the car. It makes life so much easier if I need to go to the doctors or the hospital for appointments.

Over the 2 months I have got back into sewing and actually enjoyed it rather than feel I am going through the motions. From January until June I made a bloody good show of pretending I was ok, ensuring I used my embroidery machine every week and appeared to be enjoying myself. At points I felt like I was dying inside. I felt like a shell of the person I was. I didn’t feel I could voice the pain I was in. I know others struggle with grief especially when it is over an animal and not a human being.  Like I said earlier it has been one of the most isolating experiences of my life. There just felt like there was no one there. I do wonder if there had been someone their if I would have still felt so isolated.

I do have a tendency when things are tough to disappear into myself and attempt to shut out the world. I still kept on posting on social media, I still kept the creative things going but in all honesty I was going through the motions. It is only now that I can watch anything remotely sentimental without breaking down immediately. I only now feel like me. I feel like I have been on some weird journey where at points I lost myself. It is true what doesn’t kill you makes you stronger because in January / February this year I honestly thought the pain would kill me or I wished it would.

So I skillfully went off on a tangent there, I am enjoying sewing again and being creative rather than having to force myself to do it in the hope at some point the joy would come back. I am still working on my scrap busting quilt sew along. I found out yesterday that it is between a double (bed) and king size (bed) size, so it definitely is the largest one I have ever worked on. I made the back panel for it yesterday.

And in case you have forgotten what the front looks like

This morning I sorted out the wadding ( what you call batting in the USA ) which needed sewn together. I also made some plastic templates  to draw around as I have decided to tray something totally different with the quilting. It has taken me a few days of mulling it over to come to my plans. I have drawn it out so I have something to refer to. I now just need to have Jay clear the floor space in the lounge so that I can put my quilt sandwich together quilt back + wadding / batting + quilt top. I use temporary basting spray to hold it together but as it is so large I will also be pinning it. This ensures that the fabric stays nice and flat so it doesn’t shift and give you puckers. I also managed to sort out the binding yesterday. So it is all ready to be quilted shortly. I will be quite glad when it is finished now as I hate half done projects hanging around. I am really ready to now get myself into new projects and stretch my skills.

Anyway I started with no clue where this post was going and have managed to ramble on forever!

Dembe has changed locations

He likes it so he knows exactly where I am in the house at all times.

I think this year I have learnt, a lot and we are only in August. My heart has hurt more than I ever thought possible without keeling over and dying. I have learnt in the depths of grief you are still able to love unconditionally and you must never feel guilty for that. I have also learnt that the majority of people run away from grief and think that is acceptable behaviour. Despite all this I have come back stronger, love another dog more than I ever thought possible but when you have this gorgeous mutt in your life how could you not?

And yes he is holding my thumb in his mouth!

This is the year that nearly broke me, the year that changed everything and has just proved to me I am a survivor.

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Dangerous Medicine

We all know that all medications and that  medical procedures come with a certain amount of risk – the biggest  being death. However in this day and age you would think it would be virtually impossible for a patient to die of neglect. I know mistakes can happen, they shouldn’t but they do. Someone I knew of, was acquainted with has died this week due to being falsely diagnosed with FI – Fabricated Illness. You can read about Shawn here  (and yes the newspaper has managed to spell his name incorrectly.) 

We were ( the CSF Leak group ) so happy when he made his way to Germany where he believed he would finally get the medical treatment he deserved and which the NHS had denied him for so long labelling him as having a mental health issue and fabricating his symptoms to get attention. Because Shawn dared to question the expertise of those he sought help from and because his condition was outside the scope of their knowledge, that label was applied and prevented all other medics within the NHS to seemingly be able to view his case with fresh eyes and objectivity. They all seemed to just cop-out and follow the notes of his previous doctors. If enough doctors write on your notes that you have fabricated your illness, it basically means all help is withdrawn and Shawn had to die to prove to them how sick he was. When all he wanted to do was live. 

I am so angry and just so fed up with the medical profession’s arrogance and their inability to admit when they just don’t know. Too many people are being labelled as having a mental illness and when they eventually do get the correct diagnosis – the doctors are reluctant to remove the mental health diagnosis. I’ve had it happen myself, I ended up in hospital as my stomach had swollen ( I looked like I was pregnant with twins) and had reduced bowel sounds, I’ve had an intusscesception before as a child and I have had complications from bowel adhesion’s resulting in an open surgery to remove them. (info on intusscusception ) . As I was being examined a student doctor asked me how long I had been on seroxat ( an antidepressant) the year was 2010 and I had last taken seroxat in 1999. The suggestion being that the student doctor was already looking for a mental health diagnosis for my swollen stomach and reduced bowel sounds.  She seemed surprised when I suggested she had a look at my more up to date medical notes and that I hadn’t been on seroxat since 1999. She was forming an opinion on notes from 10 years ago. It must make life so easy if you can blame the patient for being sick.

On another occasion I was in accident and emergency due to the indwelling catheter that I was having to use blocking. My bladder and bowel had ceased working the day before so the district nurse had been called in and a catheter inserted to relieve the pressure on my bladder and allow the contents of my bladder to be emptied. Having had a glance at my notes before treating me the doctor asked me how long I had been suffering with somatiform disorder. An unusual question to be asked when a catheter is being removed from your urethra. Again the diagnosis was 5 years out of date but had failed to be removed. A tilt table test ( well two) had proved I had PoTs and Orthostatic intolerance and a private rhuematologist had confirmed my diagnosis of Ehlers Danlos Syndrome. My Beighton scale was off the charts as I was bendy in joints that were not included on the scale, along with my slow healing, wide paper-thin scars, stretch marks as a child etc etc.

It doesn’t seem to matter if you have a “proper” diagnosis ( not dissing mental health here I suffer with depression and anxiety) if you have a whiff of a mental health diagnosis in your medical records all problems from then on will be attributed to your mental health issues. Just take the trapped nerve in my neck and the numbness in my arm last summer being put down to stress. It was only when I was losing my ability to grip with my hand and had a proper examination was I informed that I had an impinged nerve and if Physiotherapy didn’t help me I would be looking at spinal surgery.

I know so many people who are struggling with depression and anxiety who refuse to reveal this to their doctors and get help because they know once the diagnosis is on their records ( and especially if they female ). Many of them in the PoTs group I am (one of) the admin for I reckon 99% of the 4k membership were told that they were suffering from anxiety when they first went to their gp about their palpitations / near syncope. It’s a nice diagnosis for busy gp’s who only have 10 minutes per patient. The problem is so many people with chronic conditions are hiding depression and anxiety because they know they will no longer be taken seriously that we are now sitting on a ticking time bomb and there will just not be the resources to deal with it when it finally goes off.

Medicine is getting dangerous, it is ignoring those that don’t fit the text-book definition of the condition they have been diagnosed with and doctors are handing out mental health diagnosis without a patient being assessed properly by a psychologist or even a psychiatrist. I was diagnosed with somatiform disorder by a neurologist. It’s like having a podiatrist conduct your open heart surgery. It’s not a situation that would be allowed but many doctors who have no formal training in psychiatry or psychology are diagnosing conditions that will have detrimental ramifications on their patients treatment forever. 

You can complain, you can ask for a letter to be put in your notes, explaining that you don’t have conversion disorder, Munchausen by proxy, Fabricated Illness Syndrome, Somatiform disorder but doctors can and do choose to ignore it. Keep shouting loud enough that you don’t have the condition and it just acts as more proof that you are mentally unstable. Cry in a medical appointment discussing these falsehoods contained within your medical notes and you will be diagnosed with depression. You can’t win, the doctors hold all the cards and something has to change because too many people are dying due to neglect. When I mean neglect I mean wilfully denying treatment due to arrogance or ignorance. It makes me sick to my stomach and I am so very fucking fed up with it.

The other one they like to use against you is medical knowledge, even if you come from a medical background like nursing and would know about the condition or symptoms you are talking about. I don’t have a medical background so have had to research things because I can not trust the doctors to do it. The last time I trusted a doctor I ended up almost needing spinal surgery, as they told me my neck pain and numb arm was stress.

 Know too much about the condition and you are spending too much time on the internet looking up syndromes to have – real words spoken to me by an NHS consultant when I told him I was feeling the sickest I had ever felt. A few weeks later I was diagnosed with Meniere’s disease and a few weeks after that I found that my prolactin was raised and it was possible that I had a pituitary tumour ( thankfully I didn’t but we never found out why I was lactating or why the prolactin had been raised).

I have used the countless examples of where mental health diagnosis has been used as a cop-out by doctors to excuse their laziness / unwillingness to pursue the answer / outside their skill set on me to illustrate the point of how easy it is to suddenly find yourself fighting to be heard when you know you are sick. It is not in any way to take away from Shawn’s tragic story.

I am so angry because I have lost friends and relatives from medical cock ups. My dear friend who passed away last year was incorrectly diagnosed with COPD, only to be dead from lung cancer 7 months later. How they missed the tumours in her lungs and the one at the base of her spine I will never know. It wasn’t like she hadn’t had all the appropriate scans. The same mistakes keep being made and no one is learning the lessons the health authorities keep saying that they are.

I will defend the NHS and its principles with my dying breath but I can’t defend shoddy workmanship. The rotten apples need to be removed. The lessons do need to be learned because Sorry is no good when the patient has died.

 I feel quite strongly that we are living in a time of very dangerous medicine, where the cheapest disease is the one diagnosed, where tests are denied when there is already a mental health diagnosis present of which the patient is either aware of unaware of. The system is broken when patients can no longer trust their doctors to first do no harm.

For more information on how easily you can have an erroneous diagnosis applied to you please check out the links

It also usual plays straight into their hands if you are female.

Functional neurological disorder / conversion disorder

Medically unexplained symptoms

Conversion disorder / Somatisation disorder

Management of MUS

Factitcious Disorder

munchausens-syndrome

 

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.

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!

The last post of 2018

As we are now rapidly approaching Christmas, just a week away as of writing this post, I have decided that this will be the last post of 2018. A year that I will be particularly happy to get rid of for reasons too numerous to mention. I will be giving myself a little break from blogging and will be back on 10th January 2019 which seems a date massively in the distance but in reality is a mere three weeks from the date this blog post is published.

 I haven’t taken this long of a break for many years but some times we all just need to be in the moment and self-care. I always get incredibly stressed around Christmas, it’s not something I massively enjoy as it’s built up to be this wonderful, magical thing but I actually find it quite a lonely time. Hubby gets very limited time off work and he’s back in the blink of an eye. This may sound a bit baa humbug to some but I am guessing I am not alone in feeling this way about Christmas, as in it promises much and delivers little.

I always get incredibly wound up in the run up to Christmas, I worry things won’t be perfect, all the glossy magazines and TV programmes sell the belief that if you aren’t making absolutely everything from scratch, food, decorations, wreaths etc then you are an abject failure. In the early years of being sick I would work incredibly hard trying to ensure Christmas was picture perfect. I would make the whole Christmas dinner from scratch, I would be utterly miserable and stressed out by the sheer enormity of the task and most of the time I was only cooking for two. When I am stressed I get snappy so the knock on effect was that hubby and I would spend the whole of the Christmas dinner cooking time sniping at each other and taking offence at every word uttered. It was no fun at all. The food was absolutely delicious but was it worth the sleepless nights ( I kid you not ) and the marital discord, no way.

When in 2016 Christmas was approaching and I was suffering from a CSF leak, the stress was even worse. There was no way I could spend 2 to 3 hours upright in the heat of the kitchen without it destroying the rest of the day. The CSf leak meant being upright induced the most horrific head pain that no pain relief would touch. I came to the conclusion that for once Christmas dinner cooked from scratch could take a running jump. There was no way I was destroying my health for the rest of the day for a meal that would take 20 – 30 minutes to consume. It didn’t make any sense to me at all. So hubby bought as much as he could pre-prepared  / frozen and we had just the gravy to make along with the carrots and sprouts. Ok it was never going to win a Michelin star but it was passable and when you are chronically sick or in chronic pain that is all you should be aiming for.

Perfection is a word that is bandied around by all of us but in reality perfection doesn’t exist and we shouldn’t all be wearing ourselves out trying to achieve a marketing concept. If your roast potatoes aren’t cooked in duck / goose fat who gives a shit? If your Yorkshire puddings are Aunt Bessie’s who cares? Who knows unless you tell them and my neighbours certainly won’t be rooting around in my bin trying to discover if I was the perfect hostess or not. The pressure we put upon ourselves to have the perfect Instagrammable Christmas is just silly!

Now the above probably makes me sound like I have my shit together and that I don’t get stressed about Christmas. Nothing could be further from the truth. This year I have just found something else to worry about. Believe me if there is something I can find to wind myself up over I will and do. I just don’t get stressed about Christmas Dinner – well I might a little bit as I have to work out the timings for everything and supervise Mr Myasthenia Kid in the kitchen whilst falling over two dogs who think any food in the kitchen is fair game and only being cooked for their enjoyment.

This year I have gone down a wildly different route for Christmas presents, as in due to my new-found skills I have made the majority of them for family and friends. Initially I felt very smug about the fact that I could utilise my skills this way and wrote out lists of gift ideas and set about working my way through making them. It has proved stressful and quite difficult at times as I have battled this trapped nerve in my neck. The issue this year has been that due to the fact I have made all the gifts or the majority of them, I have panicked that people will think I am cheap.

I have found since I started that people fall into two categories, category one – handmaid equals cheap, therefore you shouldn’t charge a lot of money for any item you make. Basically they want an artisan look for pence rather than the actual cost of producing an item or category two – a basic understanding or full understanding of the price of materials, skills involved and appreciation at the fact you have spent your spare time making them a unique and individual item. It surprises me how many people fall into the first category, when you buy cheap you are exploiting another human being. Maybe that human being lives on the other-side of the world and works for peanuts so that you can have your item at a rock bottom price? If you can live with that, that’s fine.

Because this is the first time for me making gifts I don’t know what category a lot of my friends and family fall into. I don’t know if they will be making snide comments about me being a cheap-skate or if they will like the items I have made. Due to this I have probably over gifted as I don’t want them feeling short-changed. In effect instead of spending an online choosing gifts that they may not want or need or maybe thrown away, I have managed to create days of work for myself ensuring everyone feels special due to the gifts I have made them.

So yet again as you see I have managed to find something to worry about. Thankfully it is just worry and not full-blown anxiety. My anxiety levels have dropped considerably from where they have been the rest of the year, this is my normal level of worry. And to be honest if I had bought gifts I would still be worried about what people thought of them and me . So nothing has changed really.

Thank you to everyone that has read my blog posts over the last ten years, can you believe this little blog has been going on and off for all that time? Thank you to my new readers who joined this year and have provided lovely feed back either as comments on my blog or on various social media platforms.

I’d like to wish those of you who celebrate Christmas a Merry Christmas and to everyone else  happy holidays, happy Yule etc. Just enjoy the time you get to spend with loved ones be they friends or family.

See you in 2019.

First Physio

Today, Tuesday 11th December was my first physio session, in 4 years. I had no idea so much time had passed since I had been to physio. I really wish that I had kept up with it, even if I just went twice a year as perhaps I wouldn’t be in the mess I am now but life just gets in the way sometimes. Things take priority and then your routine falls by the wayside. Looking at it now I realised that I kept those exercises up for two years until I suffered my spontaneous CSF leak and then it was just too painful to do them.

I back to square minus 100, not one. I have zero core muscle strength. My shoulders are rolling forward and are permanently hunched. I am in pain from the base of my skull to my coccyx. When the doctor suggested physio I knew there was only one I was prepared to see and I was so lucky she was still working there. I use a private physio as she is prepared to listen to me and work with me. Don’t get me wrong I love the NHS, I owe my life to the NHS as without their intervention as a child I would have died from an intussusception. However the NHS isn’t great at treating the growing number of people with chronic illnesses, they want to fix you and then move onto the next patient. With chronic conditions like EDS, PoTs etc there is no fixing, so allotting us a certain amount of physio sessions at 15 minutes a go doesn’t really provide us with much help. Especially if you are working with medical professionals that do not understand your medical condition.

The physio I worked with went away and learnt as much as she could about EDS, then we worked on a plan together. It soon became clear that I wouldn’t be able to do the exercises 4 times a day, I would only be able to do them once a day and that was fine with her, Where as if I had tried to have that conversation with an NHS physio ( and believe me I have) you get made to feel lazy or guilt tripped that you are wasting their time. Seeing her again today, she had already pulled my notes and immediately recognised me in the waiting room. She greeted me like an old friend.

My back is in a mess, I know that and she knows that. We both believe that I suffered a whiplash injury when I fell on the snow and ice back in March and that has probably caused the majority of the problems I have now. Basically my muscles are very tight and tense both sides of my spine with the right side being the worst. My muscles are now guarding me against further injury by being tense and barely allowing me to move. She described it as walking around with a clenched fist permanently. After 30 minutes your hand is going to start aching after a few hours it’s going to be very uncomfortable. After months…well you get to the state I am in where everything hurts constantly.

Today’s session was very gentle before we can even start physiotherapy properly we have to get my inflammation levels down and the muscles to relax a little.I had to lie face down on a couch. My face had to go through this little hole so I could only see the floor although I think I kept my eyes closed for most of it. Now I said the session was gentle but in no way was it pain-free. My nerves are misfiring and have become so sensitized that even the lightest touch is causing me pain. So imagine having someone examining every joint in your back. Some joints were ok, they were sore but it was bearable, others had me levitating off the bed as I yelped and tried to squirm away from the light pressure being applied. 

My physio tried to massage some of the muscle knots out but it was so painful she decided to use the ultrasound machine first. It’s so weird you just feel this probe going over your neck, sides and back of your neck and then when she massages them the muscles are much looser and nowhere near as painful. I know that the muscle knots need to be removed but it is a painful process, the feeling after they have gone is sublime as you feel freer and can move more easily. 

By the end of the session I could feel the muscles were a lot looser and more relaxed than when I had started the session. However in the hours since the pain has started. It’s not horrific but I do feel battered and bruised. The weirdest thing is I have a lot of rib pain this evening. I am not sure if that’s because I spent a lot of the session lying on my front or if my back muscles are going spasm ( but a much milder version than normal).

I turned up to today’s appointment with my left arm burning with pins and needles in my hands. I left the session with both of those gone and they haven’t returned in the 4 hours since I have been home. To me that is a massive improvement as since July I haven’t had a day without constant pins and needles. 

My physio says it’s going to be a few sessions of ultrasound and massage before I can start having more traditional physio. My next session is the 19th December. 

I am absolutely shattered after today’s session, I had a busy day yesterday with getting my hair done and seeing a friend. If I could I would have stayed in bed all day. I am just hoping I can sleep tonight rather than what usually happens where the adrenaline starts to flow and I am tired but wired all night!

Women Glow…..again

Back in July 2015 I wrote the blog post Women Glow – https://wp.me/p4zBAs-c5 in which I talked about the night sweats I was having. I eventually worked out that the blood sugar was dropping whilst I slept and this was causing me to sweat profusely overnight. It wasn’t uncommon for me to have to get changed 4 times, which lead to very interrupted sleep and a feeling of constantly being dirty and smelly. Neither of which I was.

Fast forward 3 years and now I have the problem of glowing quite profusely in the day time. It started back in 2017, initially I put it down to having gained so much weight in the previous 12 months but now having lost 3 stone (42lbs / 19.051kg) and the sweat is still pouring from me – if not worse I have to admit it’s not the weight causing the issue. I personally believe that this is probably the start of the menopause, I’ll be 45 next week so I’m in the right ball park. I can’t tell you the state of my periods as having been on cerazette for many years they haven’t paid me a visit since Christmas Day 2015. I am loath to come off the pill to find out because a) I will be an emotional mess, b) I could start fainting multiple times a day risking injury and c) periods for me are horrifically painful. The last time I came off the pill back in 2011 I had a period every 20 days. Gee that was fun, so you can see why I am not keen to experiment. Although I know at some point I am going to have to, just to know what is going on.

There is nothing that I can put my finger on that makes these sweats / hot flushes worse. I literally sweat from my knees to the roots of my hair. My face at times will go bright red. The heat I generate is quite exceptional for someone who has spent their life complaining they are cold. I had my reading glasses on top of my head the other day whilst a flush was happening. I moved my glasses to use them and both lenses were steamed up with condensation. I can’t lie the flushes are making me miserable.

They seem to get worse when I am exposed to heat – which is massive pain in the arse especially when my go to pain relief is using a hot water bottle. I am using one at the moment and the sweat is pouring off me. I have lost count the number of times I have had a shower, got dressed dried my hair – the heat has triggered a hot flush and I have ended up having to change all my clothes because I am wringing wet, down to my knickers. I know it’s an attractive picture I paint. Some days after spending ages sorting out my hair I have sweat so much its become a curly mop so I just have to tie it up in  a hair band. I don’t have the energy to wash it and style it again. I really hate it as it leaves me feeling dirty and smelly. Jay assures me I am neither but I feel so unclean and when you don’t have the energy to wash again – and what’s the point the heat will just trigger another round of sweating? It can start to really get you down.

You may think I am being melodramatic but when the sweat is dripping off the hair on the back of your head  making it look like you’ve run a marathon or its dripping from your top lip, you’ll understand. This isn’t a pleasant glow on a warm day this is full on looking like I have taken a shower in my clothes. All my life I have barely sweat and now I am making up for 40 plus years of being bone dry. 

I have raised the subject of the menopause with my consultant and my gp. Both have laughed and tell me I am too young. I think this is due to EDS, unless people check my date of birth they forget that the person sat in front of them is not in their 30’s but is now rapidly approaching her 50’s – lets face it folks from next Thursday I am halfway there. Back in 2015 I had a blood test that showed I was producing luteinizing hormone. Unfortunately due to having a CSF leak it wasn’t investigated further. This showed that my ovaries were not working at all which is premature ovarian failure. At the time it was when all my bloods were strange raised prolactin, low cortisol etc etc. I have no idea if it has been tested since. 

I know the sympathetic nervous system is responsible for sweating but I doubt that this has just suddenly decided to go awry. It is more likely given my age that this is the perimenopause or the menopause. But as the NHS now no longer tests for this how the fXXk will I ever know?

As a precaution I have bought a load of supplements – sage leaf, red clover and black cohosh and if these help at all I will report back here. If they don’t I bought myself a pack of 12 flannels that I will make damp and put in the freezer – these will be my emergency cool down packs as keeping the fridge door open to cool down is a waste of electric and a risk of food poisoning! 

My other go to is to have a fan going whilst I  get my hair dried to try and relieve the sweating and dry it up before my hair gets frizzy. I hope to god the supplements help as I am on the verge of melting into a puddle.