Insomnia

I have written about my struggles with insomnia previously, thankfully though its not been something I have struggled with since around 2016 when I was prescribed melatonin and the antidepressant Mirtazapine . Both have improved my sleeping habits immensely. I also take a low dose of amiltriptyline to prevent migraines and again this helps me sleep….until last Sunday night (18th November).

Sunday nights have been a sleeping issue for me as long as I can remember. I think the sleeping problems started over the anxiety of going back to school on the Monday. Throughout my school years I was bullied, so going to school was a cause of anxiety. If ever anyone says to me their school days were the best of their lives I want to punch them in the face. For me they were a source of misery and I never knew who would be gunning for me next. Primary school was particularly awful, comprehensive school was slightly better but I just felt so out of place there having come from a tiny school of less than 400 pupils to then be amongst over 800.

After school I then had the Monday morning work anxiety. I would be ok on Sunday until about 5pm and then I would begin to worry about events that would take place at work during the week. Again I was the target of two bullies unfortunately both were my boss and when one left the business the other one jumped right in and took their place. I loved my job and was good at it but it did absolutely nothing for my mental health.

So now after years of Sunday night anxiety its ingrained in me and I can never sleep or settle down for sleep very easily on a Sunday evening. So when it happened this Sunday I just shrugged my shoulder and thought oh well I’ll sleep Monday. Yet when Monday came around the same thing happened no sleep. I put Mondays lack of sleep down to having bloods being done on Tuesday morning. Its always a drama getting blood out of me. It was it took 2 people three attempts. I’ve got a lovely blown vein on the back of my hand. 

Tuesday was also dramatic as our washing machine broke down, well died to be more accurate. It was about 5 years old and had been a really good machine – washing machines don’t seem to last very long in this house. Probably due to the dogs stuff that fills the waste pipe with sand. I have a Rug bag  which is what horse owners put their horses rugs in to stop all the dirt etc going into the machine – its a bit like a lingerie bag for horses lol! A new machine was ordered and set up for delivery the following day. We can’t be without a machine when we have two elderly dogs who have accidents.

So when I lay tossing and turning last night I presumed I was anxious about the new machine being delivered. I wasn’t remotely anxious I just couldn’t drop off to sleep and if I did drop off I was only staying asleep for ten minutes or so. Today I am exhausted three nights of very little sleep has destroyed me after being used to sleeping again. On all three nights out of desperation I have increased my melatonin, added in an extra amiltriptyline and then last night I toyed with taking my last diazepam which is my emergency pill for either the dentist or when my neck pain is off the charts. I don’t have the doctors until next week  and I will ask about an additional prescription of diazepam as when the neck pain is bad its the only thing that relives it.

Last night well technically this morning I didnt drop off until gone 02.30am , at 7am I received a text message to tell me that our new washing machine would be with us in 20 minutes. So bang went any chance of managing to sleep for a bit longer. Jay has gone back to bed. He can fall asleep pretty much whenever and wherever he wants. I am unable to do that and I am always terrified if I sleep during the day I wont sleep at night. So today I will push through until I can’t go on any longer. My plans of using my embroidery machine have gone out of the window. I am so out of it I’d be a danger to myself holding a pencil let alone using machinery. If I didn’t have a load of things being delivered today I would have crawled back into bed right now, regardless of not being able to sleep tonight.

Insomnia causes my pain levels to increase, my mood to plummet and makes me thoroughly miserable. I hate not sleeping because the knock on effects can last weeks. Its been so long since I have had a run of three nights that I had forgotten how bloody awful insomnia makes me feel. 

Fingers crossed that at some point this week I fall asleep before 2.30am!

CBD Life product review

As you know I rarely do product reviews due to the fact I think many bloggers don’t inform their readers that they are being paid to promote products. I receive no free products or money when I do a review. The products ( and there have been only a handful in the 10 years I have been blogging) I have reviewed have always been purchased by me and today the product I will be talking about was bought by me and I have no links to the company, nor have I received any money / financial incentive for this product review.

 

I follow quite a few chronically ill bloggers on various social media platforms. I pay close attention to those that have EDS because quite often they will tell you something about a product be it a brace, crutches or pain relief that you didn’t know. I was very interested when one of them said that she had been using the CBDLife products – their website can be found here  with good results. https://Cbdlifeuk.com/cbd-products/

 

I have tried cannabis oil before ( the legal stuff before anyone gets animated) but it did nothing for me other than taste absolutely foul. I had the stuff you had to drop under your tongue from a well-known national health food store It was disgusting stuff green and slimy. I think I managed to take it for a few days before I gave up. I was having to eat a teaspoon of sugar to get the grease and taste out of my mouth. From that bad experience I wrote off cannabis oil as a mad fad and nothing more. Until a friend of mine started talking about her experience of using products from CBDLife.

 

After being in excruciating pain for a few days and ever-increasing amounts of morphine not touching it I decided to take the plunge. If it didn’t work it was an expensive mistake but at this point anything was worth a go. I decided to choose the vaping method, which meant I would have to taste the stuff. Plus the blurb on the website says that the vape gets it into your system much quicker than any other route. I was a little worried about the vape as those of you who have followed my blog for a while will know I gave up smoking on 6th August 2017. I used a vape initially to help me quit for the first three weeks and then stopped using that. I haven’t smoked since. I was worried that the vape may trigger the desire to smoke but thankfully it hasn’t.

 

My vape arrived the day after I ordered it which is fab customer service. The only downside with the site, I feel is that you can only pay by credit card, bank transfer or bitcoin. I ended up paying by credit card as I felt I had a bit more protection. My vape arrived in this snazzy little case

 

 

Inside the case you have the cartridge containing cannabis oil, a USB connector to charge the vape and the vape part.

 

 

It all goes together very easily, it just simply screws together.

 

 

Now as I said earlier I had a shit experience with cannabis oil in the past and it did nothing for me. This vape contains a much stronger cannabis oil, as you can see from the sites blurb

 

https://cbdlifeuk.com/cbd-products/cbdlife-purepen-200mg/

 

I started using it as soon as it arrived. Initially the vape made me cough my guts up! I had the same issue when I stopped smoking and started using a vape. However with a couple of goes I got the hang of it. Now just to make this clear this cannabis oil is the completely legal stuff in the UK. I don’t get high or giggly or hungry taking it. Saturday night was the first time I noticed a difference, I slept the whole night through. That hasn’t happened in years, at least 10 years. No waking up in a blind panic, no waking up in pain. That really threw me and I just assumed it was a fluke.

 

However a few days later after using the vape 3 to 5 times a day, I realised that I hadn’t touched my oramorph ( liquid morphine) at all. I had a brand new bottle of it in my medicine cabinet and just hadn’t opened it. Now in all the time I have been taking oramorph that has never happened. Some days I am taking it every 4 hours to attempt to get my pain under control. I was in shock.

 

I was also sleeping all the way through the night and I was feeling much less anxious than I normally would. As I said earlier I haven’t slept through the night in years, it just never happens it doesn’t matter how tired I am, I will wake up between midnight / 1am and then I am awake until 3am / 4am. I have been like this for years no matter what medication the doctors give me to help me sleep.

 

I have been so impressed by the results of using the vape that I have dropped my slow release morphine at night from 30mg to 20mg. Again in all the years I have been taking morphine the dosage has only ever gone up never down.

 

During the last two weeks I have barely had to use a hot water bottle for back pain. I have had one bad day ( day 9) where I ended up using oramorph twice as my back was playing up and I also had some bowel adhesion pain.

 

I saw my gp last week when I was five days in using the vape and she was amazed at what I was telling her. I said this maybe the placebo effect but like she said who cares what it is if you are in so much less pain that you are able to reduce your morphine dosage. And do you know what she is right.

The type of pain I suffer from is muscle spasms, nerve pain, joint pain, basically every type of pain. It hasn’t got rid of my pain completely but then nothing ever has but it has helped massively with muscle spasms – which had me in agony every night. Even my feet have stopped going into spasm and that has never happened.

 

Overall I am incredibly impressed with this product, so much so that I bought an extra cartridge for it to ensure that I don’t run out….ever. If you suffer a great deal of pain / chronic pain it is certainly something to think about.

Quick list of improvements

Sleeping through the night for the first time in years

Not waking up in pain

Only needed to use a hot water bottle twice in last two weeks for back pain

Reduced my night time dosage of morphine by 10mg

Have used oramorph twice in just under 14 days

Muscle spasms have stopped (feet and back did it daily)

Less anxious

Feel calmer and happier

Insomnia Cure? (and other stuff this week)

**I haven’t been paid to provide a review of this product, I have also not received payment for advertising this product. This is an honest review of a product where no gain be it financial or through goods etc has been made.**

 

If you live in the UK, use social media platforms such as Instagram or Facebook or  read the newspapers and haven’t heard of Lush’s new wonder product “sleepy” then where have you been? The print media has been full of gushing reviews for this product, autistic children who have never slept more than a few hours at a time were now sleeping a solid 8 hours, insomniacs were rejoicing. Doctors were claiming it was a breakthrough in the treatment of sleep disorders. Ok so I may have just made that last sentence up but you catch my drift. The media, including social media were full of praise for the product that was allowing the sleepless to finally get some sleep.

 

So desperate had I become for a decent night’s sleep. I wanted to believe the hype. The product isn’t cheap at £13.95 for a measly 215g, ( Link to Lush website here) obviously the cure for insomnia is priceless but for most people in the real world spending £13.95 on a body lotion that may not even work probably seems a little extravagant. I have repeatedly moaned on here about how since giving up the fags (cigarettes) I am no longer sleeping. Initially when I stopped the first two weeks were heaven, then after that I was having problems with dropping off to sleep and then staying asleep.

 

I have two types of insomnia, onset insomnia – where you can’t drop off and maintenance insomnia – where I can’t stay asleep. I don’t know which is more infuriating actually I do, its maintenance insomnia as that can happen to me within 30 minutes of falling asleep. I wake up and I am wide awake immediately and I can stay that way for hours. Onset insomnia is frustrating but I just get up and do something, read, have a cup of tea. I am currently in a pattern where one or two nights a week I am having trouble falling asleep. Every night I am waking up for several hours during the night. I knew the chances of Sleepy the Lush body lotion helping me be able to stay asleep was remote but at this point I was willing to give anything a go.

 

 

I can’t remember which day I ordered the body lotion but it arrived within two days which is pretty good for ordering a product online and not paying extra for a named day delivery, I paid for standard delivery. The packaging wasn’t excessive and it arrived in tip-top condition. I was looking forward to trying the lotion when I went to bed.

 

 

The colour is a little off-putting to me with it being a lurid purple. It really smells strongly of Lavender which is a scent known to aid sleep. I have tried dropping lavender oil on my pillow and using an oil burner in my room for an hour before going to bed in the past but it’s made zero difference. It also contains sweet Tonka bean but to be honest I can’t differentiate the smell from the lavender. As expected the product does feel gorgeous on my skin and a little goes a very long way. So now the £13.95 doesn’t seem so bad as it is going to take me awhile to get to the bottom of the pot. I applied the cream to my neck, back, arms and chest, all the areas close to my nose as it is the smell of the product that is going to help me sleep. I did also use it on my feet as they are dry with the change of the season. My skin did feel lovely the following morning, including my feet.

 

The first night was a raging disappointment, despite falling off to sleep easily (which was nice) I was woken up by the pain of gastritis and the sound of a dog pacing around downstairs on the laminate floor at 1am. Usually a dog pacing around downstairs in the middle of the night is not a good sign, it’s normally a precursor to a dog vomiting. When I got into the lounge I found Frankie who seemed very out of sorts and very shaky on his feet. He had been fine the night before so I was very concerned. He didn’t want to eat when I had a banana and normally he’d sit and drool for that. When I returned upstairs I noticed that he was having great difficulty climbing the stairs. I managed to get him into my room and onto the bed (thankfully he jumped up unassisted) and I put the electric blanket on hoping that heat would help whatever was causing the problem. My husband got up a few hours later, I was still awake having not gone back to sleep. Frankie was worse again so I explained to hubby what had gone on earlier. The dogs were taken out for a very short walk and the alarm was set so we would get up early and ring the vets once they were open.

 

I did finally manage to get a few hours sleep but it was a dreadful night and the quality was awful due to being stressed out over Frankie being ill. In an ideal world a product tester wouldn’t have all this drama going on.

 

Frankie went to the vets with Mr Myastheniakid at 09.30am, due to Frankie’s age (he is 11 this week, as is Willow) I had convinced myself that this was the beginning of the end. The vet said she felt it was probably a flare up of Hip Dysplasia (a diagnosis I have never been entirely happy with as he has only ever had one problem with his hop and that was over 10 years ago. Of course that diagnosis made pet insurance ridiculously expensive.) Or he has developed arthritis in his hip. Frankie was a very good boy at the vets allowing them to take blood but he wasn’t happy at having his legs moved around. He came home off his face on painkillers, he can’t take the normal medication metacam or rimadyl as he pees blood, so he had no NSAID just a painkiller.

 

 

Friday was an incredibly long day for me, hubby was late night meaning he wouldn’t be home until gone 9pm, so I would be dealing with a hallucinating dog by myself for the day. You could see Frankie was hallucinating as he was watching stuff that wasn’t there. Thankfully at about 2pm he went to sleep beside me and slept the rest of the day. Normally I am in bed by 7pm as sitting on the sofa makes me sore but that day I had to stay downstairs all day as I didn’t want Frankie injuring himself further by running down the stairs when Jay got home. BY the time Jay did come home the injection was starting to wear off and Frankie was more with it.

 

I applied the Sleepy body lotion that night and was out like a light, I did wake up about 3am and was awake for a few hours. Again my skin was loving the lotion and was feeling very smooth. So that was two nights out of two where I had no problem getting to sleep and where I didn’t wake up within the first couple of hours of dropping off.

 

Saturday morning it was clear that Frankie was in pain again, he was panting very hard, although he was moving better. When any of our dogs get an injury I try to treat them naturally by giving them Maxxiflex  a tablet that can be bought on Amazon (and again I am not being paid to promote or advertise this product and each dog may react differently to this product so please speak to your vet). After two doses of this tablet Frankie was completely back to normal, bouncing around all over the place and no heavy panting or showing any signs of pain. We kept him as quiet as it is possible for a Weimaraner to be quiet. By the time hubby came home on Saturday evening Frankie was jumping at the front door wanting to go out for a walk and he  leapt into the back of the car without any issues. For the previous 24 he had been unable to get into the back of the car and had been lifted by hubby onto the back seats.

 

 

Despite all the stress involved with looking after Frankie and having a Grandmother who was in hospital, I did remember to apply the Sleepy body lotion. I had the best nights sleep I have had in ages, I slept all the way through the night and woke up almost feeling refreshed.

 

Frankie continued to improve Sunday, his blood test results would be back on Monday which may have given us an idea what was going on with him, be it arthritis, soft tissue injury etc. He was so much better today, we were quite surprised he had improved so much in the space of 48 hours. We were still “attempting” to keep him as quiet as possible, we were just very happy he wasn’t in pain.

 

 

Sunday night I did the same ritual I had been performing since Thursday evening covering myself in the Lush Sleepy body lotion. I will be honest Sunday nights are a real problem for me at the best of times, I have had problems sleeping on a Sunday night since I was a child. I have always suffered from anxiety if there is a break in my routine, unless I was at home. So finishing school on a friday was fine as I would be at home but starting school / university / work on a Monday and the anxiety would stop me sleeping. Despite not working anymore and not having been in education for over 20 years, Sunday evenings are still angst ridden. Which means most Sundays I lie in bed for hours, sometimes until gone midnight before I drop off. This Sunday was no different, so the body lotion didn’t do anything at all for me, it was a tall order not even medication works on a Sunday evening.

 

Monday, Frankie was completely back to normal, following me from room to room, annoying his mum / sister and me! He really was feeling an awful lot better. The vet rang late Monday afternoon and I found out that Frankie had a soft tissue injury his blood work had shown this and the vet was very pleased at how well he was doing, although Frankie still has to take it easy for bit. Yeah the vet has clearly never owned a Weimaraner! Due to Frankie’s age and size (39-41 kilos) he has developed a heart murmur. The vet said you can hear that one of his valves is leaking but it is very mild at the moment. He then went into signs that I need to look out for which will tell us that his heart is starting to fail (although the vet never said this, it was a case any of these symptoms and bring him in but I am not an idiot and know the score). So our boy isn’t a spring chicken anymore but he’s happy as Larry as long as his pack is together and that’s all that matters.

 

Monday night – slept like a log, woke up at 3am was awake for two hours and then slept until 8am.

Tuesday night – dropped off really quickly but woke up at 3am and stayed awake until gone 6am. Then slept until 8am.

 

My overall verdict on the Lush Sleepy Body lotion, well it probably needs a bit longer really to give a really good review. However if you are suffering with onset insomnia not linked with anxiety, I’d say it was definitely worth a go as long as you are also practicing good sleep hygiene. If you aren’t I would suggest trying that first. If you have no problems getting off to sleep but suffer with maintenance  insomnia then I’d say don’t waste your money, unless you apply it when you wake up in the middle of the night. I don’t know if it would help at all but it is something to try. It does smell really nice and it leaves your skin beautifully smooth. An added bonus I have discovered is that it is quite good on acne, probably due to the lavender in it. I get hormonal acne on my chin and this has calmed it right down and made it not look so red.

 

Sleep and other fairy tales

When I gave up smoking (nearly 7 weeks ago) I thought I had discovered the secret of a good night’s sleep. Initially on giving up I was sleeping like a baby, I have never understood that expression as most babies I know don’t do the sleep thing! I was dropping off within 30 minutes of turning off my bedside light and then sleeping for a good 10-12 hours. It was bliss, my back hated it but I actually started to feel something I hadn’t felt in years….refreshed.

 

Fast forward four weeks and the problems started, I also noticed at this point how unhappy my joints seemed about staying in. The slightest thing was bringing on a subluxation or a dislocation. My feet were also regularly spasming forming almost a tight ball, imagine the top of your toes touching the sole of your foot. Initially I put it down to stress, we were choosing the new colour schemes for the kitchen and the lounge, that sort of thing will keep me up at night, worrying that I have got it right. Not sleeping or poor quality sleep always seems to effect the stability of my joints. Which is why it is so important that I get a reasonable amount of sleep of average quality. When I get neither the hours or the quality not only are more joints increasingly unstable but I also end up with increased pain levels.

 

I take Melatonin and an antidepressant called Mirtazapine to help me sleep and for a good year they have been highly effective. However in the last 4 weeks it suddenly feels like I have become immune to both of them. I never go to bed until I feel tired and up until about 4 weeks ago within an hour of taking those medications I would be out like a light (about 85%) of the time. So to suddenly go from them working to still being awake two to three hours after ingestion is just bizarre. It’s also incredibly frustrating.

 

Many doctors don’t get it when you speak to them about lack of sleep or lack of good quality sleep. This is especially true if you are chronically sick, it seems that if you aren’t working and don’t “have” to do anything due to illness, lack of sleep really shouldn’t bother you. I have had this from doctors myself, it wasn’t until I was effing and blinding, crying hysterically that my gp got how desperately at that moment I wanted and needed to sleep. It shouldn’t have come to that as I had been talking about sleep issues to my hospital consultant and gp for months. It shouldn’t have been a surprise to either of them that I was now on my knees after months ( actually years) of ineffectual or absent sleep. Now when I complain about my lack of sleep I am immediately listened to. Maybe it’s the thought of the horrid, angry, crying Myasthenia Kid turning up in the waiting room that prompts such a rapid response.

 

At the moment I am soldiering on, I don’t want to get involved with doctors at the moment. Especially after Julys appointment and the hemifacial spasm (or I’m a neurologist and I will make it up as I go along) diagnosis. I am fed up with the whole of the medical profession at the moment. This is quite a typical response from me after a shitty appointment, I withdraw. My confidence has been knocked and I don’t feel I could advocate properly for myself if needed. I have found when you are chronically sick you need to be at the top of your game when dealing with any medical professional or all sorts of shenanigans can take place. You know meds being withdrawn, stupid suggestions made etc etc. At the moment it is better that I ride this out, regroup and then decide what I need to do next.

 

The joint instability is really bugging me at the moment, yesterday I battled my left hip all day. I could feel it grinding against the socket every time I moved. It kept subluxing and then popping straight back in again. There was no particular movement which was worse than any other. This meant I had zero ways of avoiding it, other than lying completely flat, which I was not prepared to do. Not after spending so much of my life last year horizontal. Today I have had issues with slipping ribs, every time I bend forward the rib is slipping and hurting like crazy. It is a weird feeling, so now I am trying not to bend forward but sometimes you don’t have any choice.

 

My body is still wracked with muscle spasms and they really have got a lot worse over the last 6 months. My feet spasming have been a problem for years, it always used to happen at night when I had gone to bed. Now it happens day or night regardless of what I am doing. The spasms can be so violent they dislocate my big toe. There is nothing I can do to stop them, I just have to attempt to massage the spasm away or wait for it to pass. My thumbs are also starting to spasm and get stuck (not like trigger finger) clamped to the palms of my hands. These do quickly release by me pulling the thumb away from the palm and stretching it out. It’s a strange one and I know that it’s not helped by the current sleeping situation.

 

Sleep, such a natural thing to do but at the moment it seems to be nothing but a fairy tale. I’d have more chance currently of meeting three bears in my house eating porridge than having a decent night’s sleep.

 

* * *

Breaking news on Saturday 16th September I actually had a good night’s sleep and dropped off quickly. I will probably go back to not sleeping from tonight!

And then it went straight back to not being able to drop off and lying awake for hours in the middle of the night.

Moaning Again

It seems currently I can’t help myself, I appear to be moaning all the time in my blog posts. No outside observation has drawn my attention to this, it’s just I am starting to bore myself with it.

 

In January this year I went gluten-free after my mum’s diagnosis of Coeliacs Disease, four weeks ago I cut out dairy, which effectively means I am now vegan (after being vegetarian since birth). I am finding it relatively easy although in the second week I was craving cheese like mad. I did however work out it wasn’t the cheese I wanted but the salt it contained. I won’t lie I have found since giving up dairy the burning pain I had in the majority of my joints all day every day has gone. Which is great but the withdrawal from dairy has been hellish, for the first three days I had an almighty headache that I just couldn’t shift. Then recently I have had to endure the mother of all hidradenitis suppurativa flare ups, which has been incredibly uncomfortable and needing antibiotics to treat them.

 

I know its very early days in my whole food plant-based journey, 4 weeks is not enough to remove all signs of previous dairy consumption from my system but I really would have rather have the widespread burning pain in my joints daily than live with the pain my back is currently generating.

 

Monday I woke up with a trapped nerve which meant I could barely walk, the pain went from just above my bum, through my buttock, down my leg and into my foot. Most of Monday was spent chasing down pain levels that would have had me weeping with despair had I the energy levels. Tuesday it wasn’t too bad thankfully as for the first time in nearly a year I had a full head of highlights done. Luckily my hairdresser comes to the house but it’s still exhausting. By the time I got up from the chair I was left in severe pain in both arse cheeks. This was muscular in origin but it still really hurt. This morning I feel like I have been kicked by a horse in both bum cheeks, I have nerve pain running down my left leg and the whole of my pelvic girdle is on fire. Iliac crest pain for me is one of the worst types of pain I have to deal with as absolutely nothing stops it. I am currently sat on my heated throw hoping that once again a few hours of this will reduce the pain enough so that I can walk without pain.

 

Although I am sleeping better since the introduction of melatonin in January or maybe it was December (pain is just clouding my mind at the moment), currently I am exhausted from the minute I wake up. The quality of sleep is just not there and I do think my back is playing a major part in this. If it’s this painful whilst awake what the hell is it like when I am trying to sleep? I say trying because currently I am waking up every few hours feeling like parts of my body are being crushed. All this despite having a memory foam mattress and memory foam mattress topper. I feel groggy all the time during the day, like I have only just woken up. I hate not having a clear head as it feels like everything is a constant fight all the time. I can only describe it as feeling like I am hungover 24/7, which is disappointing when no alcohol is involved.

 

Even on days when my back is relatively ok by the evening the pain has returned, so there is no escape. When I can’t think clearly I don’t risk doing Pilates and injuring myself but it’s a vicious cycle. I need to start the Pilates to build up more core strength but I am paralysed by pain. At some point I will have to take the bull by the horns and just do it. But as I have said before part of my fear of doing the exercises is because that is how the leak started last year. I am also terrified of being stuck on the floor alone and having to call Jay out of work. I just wish I could wave a magic wand and have it all go away. I would then give everyone else a go on the magic wand and let them reap the benefits.

 

So I find myself moaning again, which I hate doing, especially when there are others out there much worse than me.

Back Pain Sucks

For a very long time I have had problems with my back. They first came to the fore when I was 16 and I started work. The job was physically demanding with lots of bending and lifting heavy items (I worked in retail). It wasn’t long until I started suffering from herniated discs and spending a lot of time at various chiropractor’s. I wasn’t diagnosed with Ehlers Danlos Syndrome (EDS) until I was 37, perhaps if I had received the diagnosis earlier I would have been better able to protect my back.

 

When I first raised the possibility of EDS being the condition that was at the heart of all my joint problems and autonomic nervous system dysfunction I was basically laughed out of the doctor’s office. I was told EDS was so rare that if I had it, I would have been diagnosed in early childhood (this from the same doctors practice that told me the pains in my legs that kept me awake at night were growing pains and I was 26!). The fact that my pulse raised by over 30bpm (and could actually double from 80bpm to 160bpm within seconds of standing) I was told was normal for your pulse to raise on standing.Which let’s be honest is factually correct, it’s just a normal person’s heart rate will rise 15-20bpm on standing and then go back to normal within a few seconds and mine didn’t do that.  I left that doctor’s surgery a few months later and joined another practice, where I would get the support to finally end the mystery of the lifelong pain I had suffered.

 

When I did finally get the diagnosis in May 2011, I was told my spine was the most hypermobile joint of my body. It made sense as out of all the joints in my body my back was causing me the major problems. Whilst working (I left in 2008 medically retired) I found I could not stand in one place for our twice daily meetings without the pain starting immediately. I would be shuffling from foot to foot, finding something to lean up against or on other occasions finding somewhere to sit down. Standing still was agony and it’s very difficult to explain to people that you can’t stand still, when we do it all the time. At this time I was walking our three dogs for over 20 miles each week, walking could be painful when my back was exceptionally bad but I could push through that, the pain was so intense on standing still I would do anything I could to avoid it.

 

Moving is important when you have EDS, if I do not move, change positions every 15 minutes or so my body can become locked in that position. Even a short car journey can leave me being unable to stand up straight. Spending a prolonged amount of time in my wheelchair can leave me being unable to stand or struggle to transfer myself into the car. Last year I spent an awful lot of my time lying down due to the CSF Leak (which by the way touch wood, touch lots of it, looks like it has sealed itself), whilst the lying down relieved the awful headache that accompanied the leak it has destroyed my muscle strength in the rest of my body, particularly my back.

 

For the first time in 12 months I can be upright but due to prolonged bed rest I can’t do the things I want to. My legs shake when I try to stand, my back causes me immense pain when standing. The only way I can explain the feeling is that it feels like I have a lead weight placed on the top of my head and it is crushing my spinal column all the way down to my tail bone. Even walking is painful, I no longer feel like I am walking upright but as if my pelvis may collapse under me along with the bottom half of my spine. My left foot is back to being numb along with parts of my left leg. I haven’t been in this kind of mess with my back since 2014. Then I started to do Pilates to increase my core strength, it worked really well and I dodged the bullet of needing a spinal fusion. I have arthritis in my spine and a flattened disc. It was important to me that I didn’t have the surgery yet because with surgery comes a whole load of other risks.

 

I know I should start doing Pilates again but I am scared. Performing Pilates in 2016 is what “caused” the leak. Well EDS causing weak collagen caused the dura around my spinal cord to tear but I was doing Pilates when it happened. Do I want to exchange the back pain for the return of the head pain and the answer at the moment is no. A few more nights of disturbed sleep will probably change my mind. I wake up in severe pain every morning, due to not moving much whilst I am asleep. My spine seizes up and it becomes very difficult to move. Quite often when I wake my back is in spasm, so I lie there like a turtle stuck on its back until the spasm recedes and I am able to move again. My core strength has gone completely and this is putting more pressure on my spine. It’s a mess, a painful hot mess.

It seems a very cruel twist of fate that whilst my head pain has gone now that I have self healed my leak, that I am now left with pain in another part of my body. No position is comfortable now, sitting, lying or standing it all hurts. I am back to spending life with a hot water bottle tucked down the back of my trousers or like at the moment sat on my heated throw, temperature set to sear!

 

As always I am trying to push through it, increase my muscle strength so that I can get back to somewhere near my level of normal again. There is no stopping due to pain as there is no comfort in it. My painkillers aren’t touching it, like most people with EDS I soldier on enduring levels of pain that would have others curling up in a ball crying.
Back pain sucks, it really, really sucks.

The Pain Game

I thought that I was well and truly done with the level of pain I have been experiencing for the past ten days. There has been no let up other than when I catch a break through falling asleep due to sheer exhaustion. It’s not a horrendous level of pain probably only a 6 or 7 out of 10 it is the fact that it is never-ending that is driving me to the brink.

My hips, knees and pelvis are all currently conspiring against me, each in competition with each other to see who can hurt me the most. When one eases off another goes in for the kill. I can’t actually remember ever having pain at this level for this amount of time. It’s a bone deep gnawing pain, not enough to make you cry out but enough to make you consider weeping if only you had the energy left.

I have racked my brain trying to work out what is behind this pain escalation. As my mobility is limited it’s not as if I have taken up hill walking or Zumba classes. I haven’t fallen or  done any Pilates (since the pain started) or sat in a way that would put stress on my joints. There hasn’t been a constant change in weather fronts (the weather plays a massive role in my pain intensity) or a  change in medication. There is nothing I can put my finger on that I can say “that did it”. Pain without a cause is frustrating, as how do you avoid it happening again? I don’t mind if I have done something that causes a few days of pain. I can live with that, it is when my body is punishing me for no apparent reason that I begin to despair. When will the pain end or as in my case when will the pain subside to a level that I am used to and I can cope with day in day out?

My vast quantities of pain medication are not working, which would normally be the case if I was suffering from nerve pain. This isn’t nerve pain as nerve pain has a completely different quality. Nerve pain or my nerve pain tends to be a burning, pins and needles pain. This is deep within my bones. My hips currently feel like they have been replaced with metal spikes and every movement or position is searingly uncomfortable. My knees to be fair aren’t too bad they are a dull ache only catching me out when I go upstairs, then the pain makes me squeak. My pelvis or to be more anatomically correct my iliac crests feel like someone has taken a hammer to them and my lower back is probably painful because my gait has been so badly thrown with everything else hurting.

I know the pain is bad at the moment as I am struggling to concentrate for more than a few minutes at a time. I am also waking every 2 hours, unable to keep comfortable when lying in bed. Sitting provides some relief for around an hour and then the pain comes roaring back. I could quite honestly weep I am so worn down with it all. I just don’t know how to get myself out of this pain game at the moment as I have explored all my usual tactics and nothing is working. Heat provides a small amount of relief until I become too hot, changing positions is fine as long as you aren’t trying to sleep but nothing brings relief for very long.

Remarkably so far it hasn’t brought my mood down too much yes I am fed up but not depressed, there is a world of difference between those two states. Whilst it would be perfectly understandable for a person with long-term chronic pain to have periods of depression I am just seriously naffed off.

I can’t believe that years ago I would manage to work whilst suffering this level of pain. I wonder if I have become more aware of pain or if it is just now that I am at home 24/7 that there just aren’t enough distractions. When you are running a department of 130 people and fighting battles to be treated with dignity there aren’t masses of opportunities to let the pain in. At that point even acknowledging the pain would have meant I would have lost the war. I did it all on massive doses of codeine and later oramorph when I developed bursitis in both hips and plantar fasciitis in both feet.

I am starting to think maybe on the pain front I gave up and now I am forever fighting to be back in control. To feel like you have given up is almost too much to bear. I still have doubts about my chariot (wheelchair) I blame myself for allowing myself to give in and use it when I should have pushed through. In reality I know that wasn’t a possibility. Not using the wheelchair would mean never experiencing the outside world again. Even if all I do is now get to look at people’s arses due to my eye line. I don’t know if it is the feeling of giving up or a feeling that I have failed as a human being. That I am no longer able but dis-abled.

The first part of this post was written in the midst of a massive pain flare up. Yesterday the pain settled, possibly due to a mega dose of B12. Some doctors would argue it was coincidental but I don’t think so. Why after so many days of pain would it settle 12 hours after the injections? Now however I am having a bad bout of insomnia. Chronic illness is so much fun you never know what will happen next. I was naffed off with the pain before but now I am seriously pissed off as tomorrow, well in fact now today, I am going out for a few hours with Jay (hubby) for the first time since August (2015). And yes you read that right.

Unfortunately insomnia before a big event and believe me leaving the house for a few hours when it’s not a medical appointment is a huge event, seems to send my adrenaline levels soaring. I become really twitchy and unable to settle. I have been trying to wind down since 7pm, now 6 hours ago. I have got up, I have watched TV, I have read, I have listened to the radio, I have meditated there is nothing I haven’t done to try to drift off. Yet sleep remains elusive. The good news is the pain really has settled it is the best it has been in months. I am just cross with myself that I didn’t recognise the signs of B12 deficiency, it is not as if I haven’t been down this road before. It’s just this time my left leg didn’t start burning.

The other bonus is of course I get to finish my blog post a day earlier than normal. I get to put it to bed, pun intended and do not have to worry about being too exhausted to complete it as I went out on a jolly.

I really hope at some point the sandman visits, otherwise Jay will have a grumpy Rachel to deal with whilst negotiating the city centre pushing me in my chariot.