Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain go through where they wonder if they have turned into a bit of a moaner. Obviously a lot of us have pretty reasonable things to moan about but I am started to get paranoid that maybe I have crossed an invisible line from previously what was an acceptable level of moaning to an unacceptable level of moaning, for those whose lives aren’t blighted by chronic illness.

 

I usually say very little about my health on social media, its like my own dirty little secret that most days I am wracked with pain or have ptosis or feeling anxious or whatever the hell is going on that day. When I do post it’s usually because things are much worse than normal. I have posted a lot this summer about my health because things have been the worst they have been for a long time. The heat wave although helping my joint pain no end made my PoTs symptoms absolutely horrific. Every movement kicked off palpitations, my blood pressure was horrendously low in the 80/70 range most days. Leaving me feeling faint and exhausted. I could barely manage to walk some days. Many, many days were spent in bed feeling very sorry for myself. And do you know what? I get very angry  when I feel sorry for myself because I feel weak and vulnerable.

 

Regular readers will also know that my CSF Leak has come back, although it’s not at the level it was in 2016 I have had several days over the last few weeks where I have been unable to leave my bed because the pain is so intense. It makes me want to vomit. I described the pain to someone as feeling like both my eyeballs had been removed and dipped in acid then rammed back in the sockets. Whilst the back of my head feels like I am being beaten to death with a shovel. Now if you were experiencing those levels of pain do you not think, honestly that you may mention it once or twice? Or however many times that you want to. Because believe me when you are dealing with that kind of pain you just don’t care what people think.

 

Along with the pain the CSF leak brings I have also had some additional symptoms like vertigo that only goes away with lying flat. Losing my balance very easily and being unable to bend down / lean forward repeatedly as this is triggering the leak headache. As I say I am lucky it’s not as bad as it was in 2016 but it’s bad enough.

 

In the last few months I have also had my migraines return, I have ended up having to take amitriptyline every night as a migraine preventer. It’s kind of working since taking them at the start of July I have had one migraine. However my migraines have come back as if they are amped up on steroids, I have to lie in a darkened room, vomiting into my bedroom bin because I can’t get up.

 

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had an intense amount of pain in my toe. It actually hurt to touch the nail. I lifted up the side of the nail ( I had both sides removed over ten years ago due to repeated ingrowing toenails) and the nail came off in my hand. It hurt but it didn’t hurt anywhere near as badly as it had done just before the nail came off.

 

Have I bored you yet? Because believe me I am bored with it. I feel like I am in a never-ending soap opera where shit keeps happening and I have no control over it. So yes I may have mentioned on social media a few times over the summer how fucking awful I am feeling and to be fair I haven’t even touched on about 50% of the health stuff that’s been going on of late. This is just the stuff I can think of off the top of my head.

 

Admitting you are sick on social media is a dangerous game, post happy cheerful stuff and you are judged to be not as sick as you make out. Post stuff about how fucking awful you feel and you’re moaning. You can’t win. I don’t want my life to revolve around my health conditions but there will be periods of time when it does because all I can do is just keep my head above water.  To feel that I can’t express what is going on in my life, when I can go weeks where the only person I see or talk to in the flesh is my husband, just seems cruel. It’s not that I want someone to talk to – and thank you to all those who have offered me a safe place to vent. It’s just sometimes even I don’t believe what is going on health wise. I don’t think I have ever been completely honest with anyone because there is always more than one thing going on with me. I always just give those closest to me the headline news not the full story.

 

Any way that’s me, I am bored with this subject already and if I am bored with it I have probably sent the rest of you to sleep also. Mr Myasthenia Kid has been on holiday the last two weeks ( well just over ). It’s the longest holiday he has taken in years. We’ve really enjoyed the time we have spent together. We’ve managed to work on a few projects together, which I first touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  taking it from this – those dots on it are from dog drool

To this

 

Jay did the lions share of work because I am just not physically able to. I did a small amount of painting, basically just catching the bits that he missed. We have painted the stripped pine with hard wax oil which means the wood is now water-resistant and has a lovely finish. It took several days to dry and for a while we were concerned that the top of the table felt very rough. However as the hard wax oil has dried its left a silky smooth surface.

 

Jamie’s work also got the thumbs up from John Scott and Jo Carter on the Sewing Quarter. I don’t think I have ever seen Jay so proud as when they both said how lovely the table looked. I am very proud of him as it was no mean feat sanding the table top down.

 

 

 

Not happy with doing  just the bedside cabinets, the lounge coffee table on bank holiday Monday 27th August 2018 he also painted our kitchen chairs. They look fabulous and make such a difference. And we still have paint left from the 750ml of Scotch Mist Frenchic Furniture paint.

 

I also got a shout out on the Sewing Quarter Saturday 25th August – cheers John xx

 

 

Consultant Letters

A few weeks ago I requested all my consultant letters from 2015 onwards. I like to have copies of things as it keeps me straight, doctors are human beings and things get missed. However I wasn’t quite prepared for the amount of untruths, information about my health that had never been passed onto me and test results that had needed urgent action that had never been acted upon. I spent around 30 minutes just having a quick read through, as you can imagine there were probably  100 of pages of information – most of it irrelevant just showing what prescriptions I had ordered and when. But if I found all this in 30 minutes what else is lurking in my notes that hasn’t been acted upon, is a major untruth or I have never been told?

 

I want to state for the record I have no problem at all with my gp surgery, the things i have spoken about should have been relayed to me by my various hospital consultants. I can understand why my gp didn’t bother telling me about the arsehole I saw in 2015 whose letter is so full of mistruths that I wonder if it was actually my appointment he was reporting on, my gp at the time was probably concerned for my mental health. Although we did have an appointment quite soon after seeing this doctor and I made my feelings about him quite clear. Usually my old gp would rush to the defence of other medical professionals if I was voicing a negative opinion, his silence on the matter should have alerted me to the fact he wasn’t that impressed by this so – called – expert.

 

So what did I learn from this quick perusal of my consultant letters? Well I have never been naive enough to believe that I or any patient ever receives the same version of a letter your consultant cc’s you in on – actually tell I lie I know one of my consultant always sends me the same version as he never changes who it is addressed to – never me but my gp. I have seen this in the past with the version I received from one doctor telling me that he was going to do a trial of plasmapheresis to rule out Myasthenia Gravis, only for me to read the letter he sent the consultant where he categorically states I do not have MG and he thinks that all treatment for MG should be stopped. It made me look like a liar when I tried to discuss this letter with my local hospital consultant. At the time I was devastated by the duplicity. Why be one thing to a patient’s face and yet treat them so appallingly behind their back? It reeks of arrogance, that they feel they are a breed apart from their patients.

 

Firstly I learnt I have a fibroid on the anterior wall of my uterus. When I attended the hospital for my trans-vaginal ultra sound in 2015, I was told during the appointment I had an ovarian cyst of around 2cm in size on my right ovary. I was also told that this wouldn’t be monitored as it was under 4cm. At no point was I told I had a fibroid, this was complete news to me.  I was shocked that at no point had anyone suggested that I the patient be given a copy of the report after the ultrasound. Ok it’s not a huge fibroid but surely I had the right to know? Especially when there is no mention of an ovarian cyst.

 

In the same year I had a lot of bloods drawn one of the blood tests performed was a cortisol level. It was taken at 1015am in the morning when cortisol levels would be beginning to slowly drop away naturally. However my cortisol level was 107, as you can see from this abstract – https://www.ncbi.nlm.nih.gov/pubmed/12636203 a level of less that 110nmol/L shows that the patient has adrenal insufficiency. This has the potential to be life threatening as it could indicate I have Addison’s disease. Yet nothing at all has been done about this result. The hospital consultant that wrote to my gp said that he would be admitting me into hospital for further testing. It never happened. What annoyed me more was this was the doctor who accused me of spending too much time on the internet looking up syndromes to have…..yet my blood tests he reluctantly performed showed massively raised prolactin levels and this cortisol level of 107. I’ve had low cortisol before and had further tests in 2010  however my results then were not as low as they were in 2015. So now I will copy the letter and go and see my gp to point out I had low cortisol levels three years ago and possibly it would be a good idea to get it tested again?

 

The winner of best work of fiction – letter from a consultant goes to an arsehole I had to travel nearly 200 miles to see. When I met this tit I knew he was going to be of zero use, especially when as an EDS expert he told me that Ehlers Danlos Syndrome didn’t cause CSF Leaks. When you sat across from someone who is supposed to be an expert in their field and you know more than they do on a subject, that’s the time to start worrying. Hubby and I should have left at this point – research shows that 90% ( it could be 80%) of people with a spontaneous spinal fluid leak have a connective tissue disorder, of which EDS is one. So for this expert to sit across the room and tell me that EDS doesn’t cause spontaneous leaks, either meant he was ignorant of the connection between the two – not a good look for an expert or he was just a massive bellend. The choice is yours.

 

My CSF leak was diagnosed by a neurologist who has published papers on CSF leaks, you know an actual expert on the condition. However this doctor states in his letter to my gp that I don’t have a CSF leak and my headache is being caused by PoTs. This is the doctor that doesn’t believe that EDS causes spontaneous leaks and now is telling my gp he knows more than an expert in the field of spinal fluid leaks. The sheer arrogance of the doctor took my breath away, I was absolutely fizzing with rage and used lots of language that I wouldn’t wrote in this blog.

 

However there was even better to come, he wrote that I told him I used a wheelchair due to my headache…….yep read that again……I told him I used my wheelchair because of my headache…… I just laughed at that one. My doctors know I use a wheelchair for two main reasons 1) I get drop attacks where I will semi lose consciousness as I walk along, with no warning. This was the main reason why I had to stop walking my dogs unaccompanied as I had no clue as to where or when I would pass out. I could be mid-sentence and I would hit the deck. 2) I also use my wheelchair because of the various issues I have with my spine and other joints. Walking causes me intense pain, bursitis will flare up in both my hips, I get plantar fasciitis in both feet. Walking any kind of distance is just too painful. I can categorically state that I NEVER SAID I used a wheelchair because of my CSF leak. Because when I started using a wheelchair in 2008 I didn’t have a csf leak. I started using my chair to prevent head injuries from my drop attacks and to allow me to get out and go further than just walking would allow.

 

Now if that had been all the lies / mistruths he had told then I could possibly live with that but his letter was just one lie after another. He claimed I was resistant to coming off opioids despite the fact they don’t work on my pain. His main concern during the whole appointment was to get me off opiates but could offer me nothing in return to kill the pain. I have never said opiates don’t work, I wouldn’t bother taking them if they didn’t work. Opiates were the only medication that reduced my pain enough for me to be able to get out of bed after being bed bound through pain for 12 weeks. Thankfully the gp who this letter went to was the doctor who prescribed me morphine and when I discussed this attitude of the consultant that I had to come off morphine, my gp said no way, there is nothing to give you as an alternate. He said I saw what you were like before morphine, I couldn’t do that to you.

 

Oh and there is more that this cockwomble of a doctor wrote, he said I was resistant like most EDS patients to getting better………………….I’ll let that sink in. Someone at this National Unit thinks that EDS patients don’t want to get better. Now it really doesn’t surprise me as this hospital also uses the Lightning Treatment on pediatric patients with M.E. If they are arrogant enough to believe that they can cure M.E using this bogus treatment no wonder they believe ( or should I say this one doctor believes) that EDS patients can think themselves better.

 

All the doctors that have ever treated me have said what a positive mental attitude I have towards my medical conditions. That I persevere no matter how hard things get. That I can still laugh and make fun of myself when things are truly awful. So to declare in this letter that I was resistant to getting better from a genetic medical condition that has no cure is simply laughable. No wonder the hospital consultant that referred me to this hospital said he wouldn’t waste the hospital trusts money again sending any future patients there.  He couldn’t apologise enough and at that stage he knew I hadn’t seen the gp’s version of the letter, he probably thought I never would.

I would suggest to all patients that they ask for all copies of their consultants letters going back three years. Some surgeries will charge you a fee for this, i was very lucky and didn’t get charged even though I was expecting it. You will have to fill out a load of information as to why you want the information and you’ll need to provide a form of ID. They can refuse to give you these letters using the get out clause of it being detrimental to your mental health. Using the same get out of jail free card they can omit some letters from what they give you. If you have complex health issues it is essential that you have these letters and read them. If you find that tests haven’t been chased up or performed you can advocate for yourself. When you have lots of conditions / consultants it is very easy for things to get lost or lose their priority. At least this way you can be an extra set of eyes and see if things have been missed and bring them up with your consultants or your gp.

 

 

 

Upcycling

I am a big fan of upcycling and not replacing things purely because I don’t like them anymore. I like to repurpose things rather than throw things away. An old BBQ of ours was upcycled into a planter for some Ivy, rather than just being thrown away because we weren’t going to be using it anymore.

 

 

So as Mr Myasthenia Kid is on holiday for the next two weeks, we decided to embark on a project that was years overdue. Back in 2009 I bought myself all new bedroom furniture. However within 18 months to 2 years I managed to spill nail varnish remover not just over one of the bedside cabinets but both. The nail varnish remover ate into the dark stain and left them both looking awful. I was gutted, it had been a stupid accident x2 and since then I never have placed the nail varnish remover on the bedside cabinet. That was a little like shutting the stable door after the horse had bolted.

 

 

You can see how very sad the unit was looking. At this point the drawers had been removed to make sanding easier. Jamie ( hubby) used our little black and decker mouse electric sander to take off the stain from the top of the unit and also on the wood that separated the drawers. We wanted those to be stripped back to the natural pine. It was a very quick job and took no time at all really.

 

 

After sanding we had to give the unit a clean. We used a soft brush to remove the wood from where it had been sanded. Then we gave the whole thing a wash off with some hot soapy water to ensure it was clean and grease free. We then allowed the unit to dry outside in the sun. It was a very breezy day so it dried very quickly. This was going to be the first time we had used chalk paint. I had always been put off before simply due to the amount of work involved in prepping the item that was going to be painted. With most chalk paints you would have to sand the furniture down, then clean it off, then treat all the knots in the wood so that they don’t show through, then paint it and then finally wax the furniture to seal the paint. Just thinking about it exhausted me!

 

I follow a lot of accounts on Instagram that upcycle furniture and through them I heard about Frenchic Lazy range. All you had to do with this paint was ensure the furniture was clean – the paint did everything else, even the wax seal was built into this. As my bedside cabinets were such a state, I didn’t see what we had to lose they couldn’t look any worse than what they currently did. The paint does say that you only need one coat on the majority of items. However as this pine has been stained using a very dark wood stain, I knew it would need 2 coats.

 

 

Just to make it clear we haven’t received any money or gifts for telling you what paint we used. It is purely here to show you so that should you wish to give it a go you can. The paint was purchased with our own money.

 

 

We allowed the cabinet to dry outside as the weather was good and the breeze was helping it dry much more quickly than we had expected.  The second coat went on really easily and looked much better. We were in shock at how good the cabinet was looking.

 

 

 

We used a matt quick drying varnish on the stripped pine. It took around three coats to get the coverage we wanted but it was drying within 20 minutes so didn’t take long at all.

 

Here it is all finished, it is one of those paints that looks a different colour depending on the light. Outside in the photos it looks very blue, the inside photo of the drawer front it looks green – which is much more the colour that it is.

 

 

So now to crack on with the second unit.

Misunderstood

 

One of the things that has always wound me up since becoming chronically sick due to a myriad of medical conditions is the complete lack of understanding from about the conditions or the way they can make me feel. Despite Fatigue being a symptom of PoTs (postural orthostatic tachycardia syndrome) and EDS ( Ehlers Danlos Syndrome) medical professionals seem really surprised when you tell them you are knackered 100% of the time, no matter how well you slept. If the people who are supposed to get it, you know the experts fail to comprehend that you are dealing with levels of exhaustion they can only imagine, then what help is there for the non medical people in your life?

 

A few years ago I really lost my shit with someone who should have known better, they asked me how I was and I said I was really tired. Without thinking they said “yeah I am really tired too”.

“ No I mean I am really f**king tired, like I feel like I am walking around in a dream” I snapped.

“Yeah I get that when I don’t sleep well” They replied

I am not ashamed to admit that I really lost my temper as at this point I was in a cycle where I didn’t have more than 2 hours sleep a night for three nights and on the 4th I was sleeping 12-16 hours but waking up still feeling drained. I was hallucinating on the third day due to the level of tiredness I was experiencing. I had discussed this frequently with the person in question, they were not unaware of the difficulties I was experiencing on the sleep front. Yet even with all the information in front of them they couldn’t connect up the dots that going without sleep for nights on end didn’t just leave me tired, they left me barely functioning. It left me feeling as though a) this person had never actually listened to me when I was talking to them or b) that they didn’t believe me when I said how little sleep I was getting or c) they actually didn’t give a shit, I was always moaning I was tired. Any one of those scenarios is not one that leaves you feeling good about yourself.

 

After losing it with them and having to educate them in the difference between my tired – it doesn’t matter how much I sleep I am always feeling fatigued / wiped out and their tired, if they have a decent night’s sleep they feel refreshed, they never tried to claim that they felt tired in the same way I did again. Now don’t misinterpret me, I am not saying my tired is special or I am the only one in the world who feels like this. Ask most people with a chronic health condition / illness / disease and they will tell you the same, that sleep no longer leaves them feeling refreshed. Yet so many people in the medical profession will deny fatigue is caused by a person’s current illness / condition and will offer another label such as chronic fatigue syndrome – that’s a rant for another day!

 

I’ve noticed now the CSF leak is back how very few people actually understand it, I am talking close personal friends who witnessed how sick I was in 2016. So I am struggling to understand why they don’t remember that I have to lie down when the pain strikes etc. It is deeply frustrating but maybe I am expecting too much of them? Am I falling into the trap of believing that I am so important that they should remember this? I am also shocked by the number of people who have said things like

“ Oh that’s such a shame after you’d healed as well”.

Whilst I have said I have self healed I have also been careful to state it was to an extent, it had never gone away completely. I was able to spend many more hours upright but by the end of the day I was getting positional headaches that would only be relieved by lying down. I would also get photophobic at the end of the day, bright lights from screens including the TV would feel like they were burning a hole in the backs of my eyes. So whilst I was aware things had vastly improved for me, I was also aware that I was still leaking just at a much more slow rate.

 

I’ve also been really clear to those around me that it was highly likely that the symptoms of a full-blown leak would come back. The leak was probably caused by me having EDS,  as I have a weakness in the dura due to a previous lumbar puncture ( the protective covering around the spinal cord and brain) there would always be a weakness. So it’s frustrating when people question that the leak has returned – like the gp did last week. There is no mistaking a leak headache once you’ve had it. It is a pain like no other, it’s the only head pain that makes me clutch my head. I also get stupid comments from people like

“oh when I get a bad headache I soldier on because I have to. Not everyone can just go to bed because their head hurts”.

That’s when you know that person isn’t experiencing a CSF Leak headache because I will be blunt there is no fucking choice with a leak headache. You know when you see medical dramas and people collapse to the floor in pain, that’s what a leak headache is like. It hits you like you been attacked on the back of a head with a shovel. It makes you drop to your knees, if I could cry with the pain I would but when it strikes I am unable to do anything because it literally takes my breath away.

 

Somedays I am lucky and I can manage a few hours upright before I have to lie down. Other days I am upright for minutes and then I have to lie down. It is not a lifestyle choice it is the only way I can survive. It’s still not currently as bad as it was in 2016 and I am determined not to let it get that bad. Before I would push through until I was at the point of collapse. Now once the head pain starts I lie down, yes it’s frustrating but I’d rather lie down immediately than keep pushing to the point where I am bed bound for days on end. The only thing that works for a lot of people with a leak is lying flat however there are those who have leaked for so long that lying flat no longer reduces the pain that they are in.

 

Painkillers just don’t work on this headache, nothing I have ever taken has ever stopped the headache and that is the same for almost everyone with a leak. You get relief when lying flat when you have a leak because the fluid is no longer fighting gravity to be circulated around your spinal column and brain. By lying flat you increase the level of fluid surrounding the brain, which is what provides the pain relief.  Somedays within 30 minutes of lying flat the pain is gone other days it can take several hours and I am still left with a headache. However once upright again the headache will return. Obviously life spent flat on your back is not very fulfilling, its reduced the amount of sewing I can do as not only does the leak cause me pain this time it is affecting my vision. Its giving me quite a bit of double vision / blurred vision. I am having to use a magnifying glass and my reading glasses to be able to thread needles ( that is whilst using a needle threader both on my machine and when I hand sew). It makes things so much slower but I have to keep my hand in because without sewing I would be lost completely.

 

I have managed to make  a few bits, quite a bit was completed before the leak started and some of it has been completed in snatched moments when the levels of head pain are low / manageable. I have been able to finish items by hand whilst lying down so that’s a bonus. So here are some photos of what I have been making lately

 

I’ve been making a lot of baby bibs, some have been gifts and others have been paid to make.

 

 

Cushion cover made before the leak started – 

Travis bag for my Instagram Friend

 

I also made some voodoo dolls for a bit of a laugh, I never thought in a million years that people would want them but my (twisted) friends have gone crazy for them. Thankfully they all know how poorly I am at the moment and don’t expect me to rush to get things done. One of these is making its way to the USA as we speak. It’s my very first item that has gone to the USA.

 

So I still managing to do some sewing, it’s not as much as I would like but it’s enough to keep me sane at the moment.

 

Its f*****g back

I have always said that I couldn’t do 2016 ever again, in fact 2016 was such a nightmare that throughout 2017, when I referred to last year I was referring to 2015. For those of you who are new to the blog, I will give you a very brief recap. In 2016 I started getting what I thought were migraines, only these migraines disappeared within 30-60 minutes of lying down, only to reappear on standing or sitting. They were very painful, my eyes became incredibly sensitive to light. At the end of March, beginning of April I collapsed whilst taking a shower. My husband called the doctors surgery and asked for a home visit. Within the space of a few hours, I was diagnosed with a cerebral spinal fluid leak. I spent much of 2016 on my back and every 4 weeks having caffeine infusions at a hospital an hour away. 2016 was thoroughly miserable.

 

I was however one of the lucky ones, despite suffering some truly awful times in 2016 in the December of that year my leak healed. My symptoms never completely disappeared, I was left with tinnitus, every so often I would get occipital neuralgia pains in the back of my head, once in a blue moon on standing I would get a head pain but really life was pretty good. My leak symptoms had reduced to the point where I could be out of bed / sat up for hours rather than minutes. By the evenings initially I would get a positional headache which meant I had to lie flat but I had a large chunk of my life back. In the back of my mind I always knew there was a high probability that this could come back. I was very careful, twisting, bending basically anything that could blow the seal on my almost healed leak. I did everything I could to ensure it didn’t come back but sometimes it doesn’t matter how much you do, a set of circumstances are played out for which you have zero control.

 

On Sunday we (Mr Myasthenia Kid and I) went out for a drive. I needed to get out of the house as I was going stir crazy and the dogs needed a walk. I would sit and admire the view whilst Jay walked the mutts. On our way to the walk, on a single track road going no faster than about 25-30 mph due to twists and turns / few passing spaces, up ahead of us a dog ran out of the bushes at the side of the road. Jay did an emergency stop, we didn’t hit the dog (for which I am very grateful as that would have upset both of us a great deal). An ashen faced dog owner emerged from the bridle path, apologised, got the dog under control and we thought no more of it…..well not for about 10 minutes anyway,

 

Although we had been going at a low speed and stopped quickly it was enough for me to be thrown forward and back, despite having my seat belt on. For us bendies sudden movements like this can do quite a bit of damage. Whilst waiting for hubby to return with the dogs my back started to hurt and so did my head. The pain was at the base of my skull and top of my head. I knew immediately this was just like a leak headache, I panicked and sat there counting down the minutes until Jay got back to the car. When we got home I told Jay I needed to lie down as I had a headache. At this point I was hoping that it would settle, that I was just sore from the emergency stop. I put the TV on as I wanted something to distract me, but the light from the TV hurt my eyes. So I put my sunglasses on, in an already darkened room- blackout blind was drawn and all lights were off. After a few hours my head stopped hurting and I went downstairs. After a few hours my head started hurting again, so I had an early night. I hoped that tomorrow (Monday) it would be better.

 

On rising on Monday, my head hurt a little but it was nothing like the pain I had in 2016 the morning I collapsed. It hurt and was noticeable but there was stuff I wanted to do so I put it to the back of my mind. However by 2pm I couldn’t ignore the pain any longer, 2 expresso’s had done nothing. I went back to bed and again needed sunglasses to watch the TV and use my phone so that the light didn’t hurt my eyes. After lying down for 3 hours my head felt ok, it was a bit twingey but nothing major. I hoped that whatever it was causing the pain would settle. However when I messaged Jay that I needed some caffeine energy drinks, he asked straight away if the leak was back. Even though this was all done by text I knew the panic he was feeling because I was feeling it too.

 

By Tuesday, ten minutes after getting up I had to lie down again. I have to stress it is nowhere near the level of pain I was in before in 2016. I just know that it’s better to lie down than be a hero and wait for it to be sheer agony. Jay rang the doctors surgery at 9.30am, asking for a home visit. I know many of you will not have this available to you where you live. I am eternally grateful that I still have this service as there was no way I could have sat in a waiting room with a head wanting to explode. I lay in bed all morning, unwashed but it clean pjs. Greasy haired and looking like Casper the friendly ghost. My back was being uncooperative, it doesn’t like me being immobile. I moved into every position I could that kept my head as flat as possible. My back was playing hardball, it’s been sore since Sunday, which isn’t that surprising.

 

When I first got diagnosed with a CSF leak it was my old wonderful gp, who has moved away and left the practice. I was concerned as to who I was going to see today because I have found none of them to be as clued up or as willing to learn as he was. I was visited by my new gp who I have met on a couple of occasions. The appointment or whatever you call a home visit was fine. I did however have to convince the gp that this was not whiplash – which would be a perfectly acceptable diagnosis if I was displaying signs of whiplash – which I am not. My neck isn’t sore, I have altered sensation in the right side of my face a bit numb along with pins and needles and I have a headache that becomes more intense the longer I am upright. I feel ok lying down – although all screen use requires sunglasses as I have photophobia. I ended up saying to her, I would love this to be nothing more than a case of whiplash, that would be the perfect diagnosis because it would mean I won’t be spending day after day flat on my back. But I said this isn’t whiplash, this is a return of my leak. I told her I am treating it myself at the moment – my salt tablets were increased to ten a day last week to cope with the heat, that is the same dose I was on last year. I am drinking coffee and energy drinks like they are going out of fashion. I am hoping conservative non – invasive treatment will be enough to get me through this. I don’t want a repeat of 2016.

 

It became clear whilst talking to this doctor she wasn’t very clued up on spontaneous CSF leaks or EDS. It’s such a shame that ignorant doctors try to tell you that they know best without educating themselves first. She trotted out that blood patches don’t work………..I couldn’t be bothered to argue with her but they work for around 80-90% of people first time around. She didn’t believe that EDS alone could be the cause of a spontaneous leak……..I think my last copy of Fragile links that had about CSF leaks in it will be making its way to the surgery, along with all my CSF leak handouts from the UK charity the CSF Leak Association ( which you can find here https://www.csfleak.info/).

 

However I am happy that she is referring me back to the neurologist that treated me last time. How long I will have to wait before I get to see him is anyone’s guess. At the moment I am hoping that the pain levels stay as they are and don’t increase, as no pain relief helps the pain a leak causes. The only thing that helps is lying down…..which would be fine if my back wasn’t such a mess and hated lying down longer than a few hours at a stretch. I have made it downstairs late this afternoon and I am lying on the sofa to give myself a change in surfaces – to keep the old back happy!

Sewing Secrets

I am officially one of the worlds worst secret keepers! How I have managed to keep the following items a secret over the last few weeks is beyond me. When I make something for someone I always want to give it to them immediately  or I accidentally let slip what it is. This time however I have been strong even though it has been incredibly hard.

 

A few times recently in blog posts I have said that I have been unable to share what I have been making that week due to it being a present. Thankfully I can now share with you my makes – which I am incredibly proud of as these two birthday girls have received their gifts.

 

Imogen will be 21 on 23rd June and is incredibly special to both me and Mr Myasthenia Kid. I discussed with him months ago what I would like to make for Imogen’s birthday and he was in full agreement. It took me a little while to source the material as I wanted all kinds of Unicorn fabric but I also wanted it in Pink and Grey so it wasn’t over the top girly.  The first item I made was a 20 inch square cushion cover in a Dresden Plate design

 

I had a bit of a nightmare with the cushion pad as although it was sold as a 20 inch cushion pad, it was actually a lot bigger. I, being a novice and idiot didn’t think to measure the cushion pad before I started making the cushion. I just presumed that if something was being sold as a 20 inch square cushion pad that is exactly what it would be.  So when I placed the cushion pad inside the cover it looked terrible – in fact stuffed sausage would be an accurate description. I was almost in tears as I had worked so hard. So I decided to measure my completed cushion cover and make my own cushion pad to fit it. I used my overlocker to do the edges of the cushion pad and the ladder stitched it closed once I had placed the stuffing inside. I took apart the bought cushion pad and ended up with two nice squares of white fabric and a little excess stuffing.

I also wanted to make Imogen a quilted patchwork Tote bag. I had already made one as a project in my subscription box was this exact thing and they had sent out 42 charm squares, lining and webbing for it to be completed. I had really enjoyed putting it together and couldn’t get over how much I was using the bag as it was so roomy yet so light weight. So I made my own charm squares and bought the webbing online andknocked up one for Imogen.

 

 

I scotch guarded both the cushion and the bag to help resist stains. Imogen can be a little clumsy the same way I can. I also gave washing and ironing instructions with each.

 

Last week on the spur of the moment I decided to add something extra to Imogen’s gift. I had been doing some redwork for my other friends gift but want to change it up a bit so I found a  unicorn design online, unfortunately there is no attribution for this work so I can’t give credit to the artist. I did change it up just slightly by putting a heart around it and not using the words that had been printed under the design. Here is the finished item

 

 

I have filled the inside of the cushion with a mixture of stuffing and dried lavender. It smells divine and the whole house smelt of it for a few hours as I filled several lavender pillows that day. I again provided washing instructions / care instructions just in case. Imogen was given her gifts on Saturday. The message she sent me after opening them was so lovely it made me cry, then Imogen’s mum Helen sent me a message in the evening which was really lovely too and that made me cry as well. It’s really nice when you have spent hours working on an item and the person is overwhelmed by it and is truly grateful for them.

 

My oldest Exmouth friend Ellie also has a birthday in June ( not until the 30th but with works schedules etc it was difficult to know when I would see her next) . I gave her the gifts I had made this morning.

 

This is a redwork lavender pillow. The redwork design was free from a site called https://www.birdbraindesigns.net/ which has some really lovely designs on there. I added my own embellishments to the design and also added Ellie’s initial to make it even more personal.

 

 

This has again been filled with stuffing and lavender. It’s a lovely small size that could be placed under a pillow or in a drawer to leave the scent of lavender behind. I have really enjoyed doing the redwork and have made several more as gifts for people. They take me several hours to do but I really enjoy sewing them. The stitches on these and the unicorn cushion are very basic just a running stitch, back-stitch and french knot are all that are needed to create something that can look quite stunning.

 

The second part of Ellie’s gift had been in the planning stages for ages. I was scared to start it as it was something different than I had ever made before. Plus I kept adding to the level of difficulty. It was the first time I had used the product Odecoat which ( depending on how much you use) can make something totally waterproof. I did enough to make the item water-resistant / stain resistant inside and out.  This was also the first time I had used my machines embroidery functions, I also used the memory function. I used an iron on stabiliser as well and proper embroidery thread. So it was a project of firsts. The pattern comes from Lucy Brennans blog / website https://www.charmaboutyou.com/ and the pattern is the #pieceofmepouch. It’s so stunning and once I had my head around it not difficult to make. I also have to say a massive thank you to Lucy who helped me out when I was being a bit dim and not understanding the pattern. Lucy is always so encouraging and supportive, I can’t thank her enough.

 

 

This week I also had to make my dads father’s day gift.This had been rattling around in my brain for weeks. I knew I wanted to make him something that was special and a one-off but what. I decided after gaining confidence making the piece of me pouch that I could use aspects of that and make my dad a bag to carry his (clean and empty) dog poo bags. I decided that I wanted curved edges on the top, that I wanted it to be 3D rather than 2D. I wanted a loop on the back so he could attach it to a belt and I also wanted a clip on it so that should he not be wearing a belt he could attach it to his belt loops. It also had to be small enough that it would impede his walking.

 

In my mind’s eye I could see exactly what I wanted so last Wednesday morning I sat with an empty bonio box ( dog biscuits)  in front of me and made my template. I used Odecoat again to help make the fabric water-resistant and to make it a bit stiffer. Also when I quilted it, I made the lines much closer together as I knew this would make it much more rigid. I am delighted with the way it’s turned out. Unfortunately due to a series of events out of both of our control I have been unable to give it to him as yet. I am pretty sure he doesn’t read my blog – mum does so I will be safe posting it here.

 

 

My last make of the week was this Owl stuffed toy for Jamie, it was his father’s day present from the dogs.

 

I absolutely adore this and it looks so cool on his bed! So far the dogs have left it alone.

 

* * *

Health wise I have been up and down. The heat had been causing a lot more ptosis than normal. I can really feel the mestinon wearing off after a few hours so I have had to been really strict with my dosing schedule. As once I get full-blown ptosis it can be difficult to shift.

 

I managed to have a large abscess develop under my breast due to the chronic skin condition Hidradenitis Suppurativa. Tuesday afternoon this decided to erupt and immediately go into cellulitis. My breast was so painful I couldn’t wear a bra. Thankfully the antibiotics had it  gone right down within 3 days.

 

A few days over this last week I have been woken up in the night in a lot of pain with a headache ( not a migraine) . I managed to work out on Sunday that it had been due to the position I had been holding my neck in whilst sewing. This was causing me pain through my collar-bone and deep into the soft tissue of my neck. This was then causing me to have awful headaches. I actually got very paranoid that my CSF leak was back, until Mr Myasthenia Kid pointed out that Leak headaches don’t start when you are lying down, they start on sitting up. This headache was with me whatever position I was in. It was not a leak headache more poor posture due to the heat making my muscles weaker than normal.

 

This morning I woke up with a bad pain under my sternum and a burning feeling in the back of my throat. I immediately worked out that when I had taken my 4am antibiotic (despite drinking loads) it had become stuck in my gullet. The tablet had dissolved in the back of my throat and burnt the tissue. I have been drinking gaviscon straight from the bottle and drinking only water to settle it down. It is feeling better than it was but there is still a burning pain. I have had issues with taking capsules for years due to problems with my swallowing. This just highlights again how much weaker this has become during the heat.

 

So although it may seem like I must be doing ok because I have sewn loads don’t let online appearances fool you. Everyday I am on the maximum amount of painkillers I can take as my back is so awful at the moment I have been having pins and needles in both legs. I’m either too hot and feeling faint or feeling cold thanks to my wonky Autonomic nervous system. I am just determined to do my best every day and be the best that I can be and let the creative juices flow. It is what makes me happy. It doesn’t take away all the shitty  health conditions I am living with every day of my life.

Reviews

I don’t tend to do product reviews and I am always highly suspicious of bloggers who are always saying how wonderful a new product is, failing to mention they have been provided the product free of charge in return for a favourable post.

 

I am also quite hard on products and I am acutely aware of what may work for me may not work ( or even fail miserably ) for others. However when I do find a product that works well for me I like to share. Now I just need to make it clear, I have paid for these products myself and I have not been asked to provide a review for them. I am just sharing these products with you because I know many of you who read the blog have the same problems as I do and they may help you.

 

The first product is the icloudy pillow made from memory foam. I have included a link to Amazon as this is where I purchased it from. At £35.99 I am aware its not cheap, particularly for those on a limited income. For me it’s been worth every penny.

 

Icloudy pillow at Amazon

 

I have bought many different neck pillows over the years in an attempt to stabilise my neck whilst sleeping. Due to EDS (Ehlers Danlos Syndrome) I have terrible problems with my neck being unstable, a physio once described me as having an owl neck, as I can twist my head around so far. I wake up with horrendous headaches, stiff neck and just in an awful lot pain. I have said to many doctors that a lot of my headache issues and possibly my leak have been caused by my necks instability. Unfortunately in the UK this seems to be an area that is completely neglected by the medical profession when it comes to EDS. With many EDS patients facing the choice of raising hundreds of thousands of pounds to have surgery abroad or face a slow agonising death. Now I am nowhere near that bad thank goodness but a few weeks ago I woke up in agony. My head pain was so bad I was convinced that my CSF leak had returned. I couldn’t do anything as the pain was so severe. I took every painkiller available to me and it just wouldn’t shift. In desperation I took a diazepam (which I had been prescribed for anxiety) it was the only thing that worked which thankfully proved to me that it wasn’t my leak coming back. You have no idea what a relief it was.

 

Over a few months my neck had become increasingly painful, sleeping which should be a comfortable and relaxing experience was leaving me racked in pain. I was already using a memory foam neck pillow but it wasn’t doing anything for me. The only relief I had found was sleeping with just a rolled up towel under my neck but due to EDS causing reflux, it was a no no, as I kept waking up choking on my stomach contents. I also tried lifting the head end of my bed and sleeping on a rolled up towel placed under my neck but again…one night was fine but the following night my lower back and pelvis were extremely painful due to the angle raising the head end of the bed was placing them in. Out of desperation I searched online for a different type of neck support pillow. I needed one that supported the natural curve of the neck but also dropped my head back rather than it all being on the same level which is completely unnatural. After a good look I discovered the Icloudy Pillow, which was shaped completely differently to any pillow I had tried before.

 

Side view

View from above

As you can see the centre of the pillow is the lowest point so it allows for the curve in your neck (my curve is completely reversed). The difference has been incredible. The first night I thought it was a fluke, my sleep was totally different and I didn’t wake up in the night with pain radiating from the back of my head to the centre of my shoulder blades.  The second night I had a bit of pain from lying so flat, so added one wafer thin pillow on top of the icloudy pillow to see if that helped and it did. I woke up again pain free. In fact every day since using this pillow I have woken up without my usual headache and neck pain.

 

I still have to be really careful moving during the day, today I have managed what I call a crick – I am guessing normal people may call it more than that. So I have pain in the base of my skull and at the top of my shoulder blades. I can live with that, its no where near as bad as a leak headache. My quality of sleep has been completely altered by using this pillow. I can see now why it gets so many good reviews. The good news is that it will also fit in a standard Oxford pillowcase so no special case is needed for it.

 

Now as I said I am suspicious of bloggers who gush about products without making it clear that they have received financial compensation for doing so or received the product free. I never get free products and wouldn’t feel right gushing about a product that I think is shite. So if I tell you about a product it is because it worked for me and it may possibly work for you.

 

Those of you who follow my blog will know a few weeks ago I took a tumble in the snow. At the time I wrote about the fact I had hit my head and that my legs were really sore. Well I obviously had distracting injuries as a few days later I was noticing that it was very sore to sit down for longer than about 10 minutes (not good when you love to sew and even worse when standing makes you want to faint). I realised I had damaged my coccyx in the fall. I was quite plain speaking when I told Mr Myasthenia Kid how it felt “ Like someone has hit me with a shovel between my arse cheeks” – don’t say I didn’t warn you ha ha ha! It was very painful and very frustrating as I was only comfortable lying down but my back hates me lying down.

 

In desperation again I wondered if there was such a thing as a support cushion for your coccyx. Again on Amazon I stumbled across the Supportiback pillow –https://www.amazon.co.uk/gp/product/B01MF52K0I/ref=oh_aui_detailpage_o04_s00?ie=UTF8&psc=1

At £29.87 it’s not cheap, but when you can’t sit down without being in a lot of pain and you can no longer do the thing you are completely addicted to – sewing, then believe me you’ll pay any price to no longer be in pain. The great thing is with the cushion is the size, I won’t lie currently I am wide of hip so need a large cushion, this doesn’t disappoint. I have taken the photo on my kitchen chair which is a standard Ikea chair.

 

The hole in the back is placed underneath the Coccyx so that no pressure is applied.

 

It’s made of memory foam and has a gel surface to it. It moulds to your body contours and it has also relieved the pressure I feel on the backs of my legs when I have been sat for a while. I also like the fact it is breathable so it doesn’t leave you feeling hot and sweaty when you have been sat on it for a while. The difference for me was night and day. The cushion also doesn’t slip and slide so feels completely safe when you are getting up and down. I only noticed this morning when I took a photo of it that it has a handle on the side to carry it. I am contemplating buying another one for me to use in the car, as that is now the only seat that I feel very uncomfortable on. With the cut out at the back of the cushion there is now no  pressure being applied on my coccyx which is also allowing the injury to heal much faster now. I read in a lot of the reviews that people were also using these as cushions in their wheelchairs and mobility scooters which is another excellent idea.

 

So no more numb bum or back of my thighs when I have been sitting at my sewing machine.

 

I hope you have found my reviews helpful and if you have any questions about either product please don’t hesitate to get in touch or use the links in the post so you can read the reviews left by Amazon customers.