Empathy

When I wrote last week’s blog post Rainbow Bridge  I never expected in a million years the response that it received. It wasn’t just me hubby had people coming up to him in work, telling him that they couldn’t read it without shedding a tear or that it said what they felt but had never been able to express it. I had followers on Instagram contacting me about their recent losses and long ago losses too. On Facebook it was the same, with many people contacting me or leaving a comment. . It was emotionally hard as I am very empathetic, so when people start to get tearful when they are talking to me, it makes me cry too. But when I wrote the post I was half expecting it to stir up a lot of emotions because I had been in such a mess as I wrote it. I have to be honest I never did a final check on the post to look for errors, mainly because I found it so upsetting to read, it was real and raw. I haven’t even gone back to look at it now to refresh my memory before writing this one. I just can’t do it, I have already been in tears today twice over the dogs. It is always just bubbling away under the surface for me at the moment, although to look at me or to see any of my social media posts you would never know.

I am so touched that something I have written has moved so many people. I thank each and everyone of you who commented or messaged me. It was very hard last Thursday as I had no idea how it would be received. I had no clue if people would think I was wallowing, being self indulgent or a drama queen. That people would think that I should pull myself together and get on with the rest of my life. I promise you I am not self indulgent, wallowing or being a drama queen. I just write about life and my experiences. I try to give a voice to those feelings that we push down and don’t let anyone else see. I take a chance that people won’t reject me or ridicule me because I try to talk about things that many would rather brush under the carpet. Although there have been several articles regarding the death of a pet in National newspapers it is still treated with some degree of disbelief by those who have never had an animal / pet in their lives. 

The whole point of my post was for you – whoever you are, know that it is ok to feel whatever you are feeling, to express your grief ( and it is your’s and no one else’s) anyway that you like. That these feelings are totally normal. You are not weird, you aren’t wallowing in your grief, you aren’t an attention seeker and you are certainly not being a drama queen. You are hurting and it will take time to process all that emotion. Hell I am only 8 months on and there are days where I can barely keep it together. Days where all I do is cry. Days when I feel guilty when I know rationally I have absolutely nothing to feel guilty about. I just wanted you to know you aren’t going mad, I honestly thought at times I was losing it. All of those feelings, even the uncontrollable rage that even surprises you when you roar, is totally normal. It is the beast called grief and it doesn’t have to be something that you go through alone.

As I touched on in my blog post even when you have suffered from a significant bereavement such as a partner / child / sibling / parent / friend, people who haven’t been through that kind of grief can’t begin to imagine the enormity of the feelings of loss and pain. They may see you red faced, tear stained and see your grief but that is soon forgotten because it has no direct impact on their lives. The next time they see you, taking the kids to school, going to work, getting the shopping – all things you have to do despite the pain and grief they assume you are “better”. They don’t understand that grief goes on forever. They seem to think that grief has a timeline and by a certain amount of time say 6-12 months maybe sooner if they are real dicks, you “should” be “over” it. How do you explain that there is no getting over it? You are just getting through each day the best you can. There will be good days, bad days and the worst kind of days.  Life will probably never be the same again. But there will never be or has there ever been for anyone who is grieving a time when they are over it. Getting Over It has to be the most grotesque phrase ever. Followed by Time is a great healer. There is no healing from grief, you carry that pain forever.

I had people contacting me about dogs they had lost thirty years ago during their childhood that they still mourned for.  Others told me about their recent losses that they just couldn’t process or that in the proceeding days before my blog post it had hit them, after thinking that they could keep going and carry on as normal. I was quite honest when I spoke to them and told them Jay and I have very little memory of January and February this year.

 We know we got Dembe, we know he was tiny but ask us to recall anything significant like where we took him on his first walk. What the date of his first walk was, his first bark, his first growl all the stuff we would normally remember and we draw a blank. It’s not because we didn’t care about it, purely our brains were overloaded processing what had happened when we lost Frankie and Mollie within 7 days of each other. I am so glad that I started the Dembe Diaries blog and his diary that I base the blog on, so that in years to come I can look back and see all those things in black and white that my brain was unable to absorb at the time.

 I do remember Jay barely spoke in the first 4-5 days after it happened. It was quite stressful as I went into list mode, trying to control everything because my anxiety spiked. His anxiety spiked because I was making so many demands on him all the time and obviously he needed to have some control in his life too. It was very difficult trying to get him motivated to help me sort the house out ready for Dembe’s arrival. Especially as we couldn’t stand being in the house as it was just full of reminders of how empty it was. We did cry together and we did talk about our babies, all of our babies. But the pain and grief was hard because although it has happened to both of you (or all of you) it is also an individual thing that no one can make better or take away from you. People grieve in different ways. Just because Jay wasn’t breaking down in tears every 5 minutes like I was didn’t mean he wasn’t hurting or struggling to cope. You only had to take a look at him, ashen faced, tired and so very quiet, grief and pain was written all over him. For a few days I was worried that he was going to drop down dead from a heart attack or stroke he looked so ill.  

Grief is weird one minute you can feel like you are doing ok and the next minute it feels like the world is imploding. There is no rhyme or reason to it, you are carried on its current and it takes you wherever it pleases. There is no control of it, it controls you initially, even denying you sleep when it wants to. Both Jay and I suffered from terrible insomnia in the 7 days after Mollie and Frankies passing. We would find ourselves downstairs in the middle of the night watching crap on the TV whilst eating chocolate biscuits and drinking sugary tea in the hope we would just pass out from a sugar overdose. I remember one day within about 20 minutes of each other we both left the electric shower on, when we left the bathroom, returning to it a few minutes later, neither of us could work out why we had left it running. We had no recollection of leaving the bathroom.  Life really was being lived on autopilot, all we could do was keep putting one foot in front of the other and get through another day.

I want to tell you that things do get better, the grief becomes less overwhelming.  I feel like I am finally starting to live life again instead of just simply going through the motions. I am not saying that in 8 months you will also be feeling better, it could be less time it could be substantially more time. But there will come a time when you let a breathe out and know that you are starting to be you again.

Up until about a week ago the last time I listened to music and enjoyed it was 29th December 2018. That was the day that Frankie passed away and I had been listening to my Sinead O’connor LP. I didn’t play any music for a couple of weeks. After that time had passed, I tried but I found the noise too much and overwhelming. I had no emotional connection to the music. I would rather be in silence or have the TV on low in the background.  For the last two weeks I have played music non-stop. I have sung at the top of my voice and quite possibly scared the neighbours. I have found the joy in music again. I haven’t played my Sinead O’Connor LP, I think that one will take some time. I may not play it again for several years, I’m not setting myself a target, I will let it happen, I won’t force it. One day I will sing something from the album and it will be like an ear worm that won’t die until I play it. At the moment anything from that LP makes me sad.

We have also started planning things for the future. We have booked  a short break in the UK next year and we will be taking Dembe with us. It is very exciting. This will be the first time since 2006 that Jay and I have had any sort of holiday. It is only 3 nights away but it will do us all some good just to get out of the house and away from the day to day. I am nervous as hell as I have become a real homebody since becoming ill. Other than stays in hospital I haven’t been away from the house in 13 years. It is hilarious to me that I am getting a bit anxious thinking about it when Jay and I have travelled to Sri Lanka, USA (Florida), Antigua, Paris, Menorca and various places all over the UK for weddings / christenings. I know that we can do it, it is just my world has been so very small over the last 13 odd years.

So please be kind to yourself, wherever you are in your journey with grief. Everyone does grief differently, there is no one size fits all. What works for you may not work for anyone else.  Remember living life does not mean that you have forgotten those who are no longer with us. At some point things will get easier, you will reach a new normal. It is not a journey you have to do alone. If more of us start talking about grief and how it affects us we will educate those who have never experienced it and maybe create a little more empathy. The world could really do with more empathy at the moment.

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!

A trip of a lifetime

 

Next week hubby and I will be visiting the Emma Bridgewater Pottery factory. It’s a trip that we decided to take around two months ago. We never thought we would get to visit it so soon. We always had thought we would have to wait for a few years before we made the trip as we would “have” to do it over two days but we decided to bite the bullet and just do it in one. It will probably leave me quite sick, there may not be a blog post next week, if the exertion hits me really hard. However I am determined to enjoy myself and live with the consequences.

 

 

A trip even for an able-bodied person can involve lots of planning, as the whole thing has seemed rather surreal to me I hadn’t really started thinking about the trip and the reality of it until yesterday. Now my lists have lists. I did order a road atlas as we are old school and don’t use a sat nav. Our road atlas was invaluable on a trip many years ago when we were on our way back from a family christening in Norfolk and the M25 was closed. I took on the navigating responsibilities and got us to the M4 by going the scenic route rather than sitting for hours in a huge tailback. Also last week I finally printed off the directions from the AA Route Planner – both there and back (I have made that mistake before!) The tickets have also been organised and placed in a folder. But that is just the tip of the iceberg of stuff that needs to be done.

 

 

Due to the sheer volume of medications I take, I have had to try to come up with a working solution of taking extra meds with me just in case I need them. I really didn’t want to be lugging around a full-size 300ml bottle of morphine when I may in the course of the day take only 20ml. Same as I don’t want to be taking 200 paracetamol or a blister pack of ten slow release morphine tablets. My handbag will resemble a pharmacy if I am forced to take all these things, I already have a print out of all my prescription medications which I carry at all times. It really is a pain in the arse having to be so thoroughly bloody responsible but the consequences would be awful if these things weren’t properly managed. Not keeping on top of my pain medications means I can be in agony for 48 hours until the situation is back under control. Even when I am having a good time I can’t forget my pain meds as further down the line I will be jolted back into reality with searing joint pain.

 

 

The anxiety levels planning for this trip has induced are off the charts. I am an anxious person by nature but it had been under control for many years just raising its ugly head anytime I was more stressed than normal. Since giving up smoking though my day-to-day anxiety levels have increased. Anything and everything is setting me off, even the most basic things can leave me doubting myself or working out the worst case scenario of every situation, what I call catastrophizing. However unlikely the catastrophe maybe likely to happen. It’s a horrible way to live as it makes you so desperately unhappy. You spend your whole life ignoring the here and now, worrying yourself sick about the future, something which you have zero control over. It literally sucks the joy from any situation. So even though the anxiety about this trip is causing me sleepless nights I am determined to go, to prove to myself that I can live in the moment and enjoy myself. If my anxiety levels don’t settle down after this trip I am going to have to make an appointment to see my gp as this level of anxiety isn’t normal. It’s not my normal.

 

 

With 7 days to go until my trip ( it will be less again by the time this is published)  my lists have lists. Writing lists does seem to soothe my anxiety until 1am when I wake up most nights in a panic about something or other. Thanks to the Lush Sleepy lotion which I blogged about here , I am getting off to sleep much more easily. It is just staying asleep that seems to be the problem. At least now, well during the day I will have a list I can check and re-check, to ensure I have planned for every possible outcome. When my mind is occupied with writing, crafting etc it is easy to feel calm and in control. The waking up in the middle of the night is just frustrating because that is now actually starting to make me ill, due to the lack of sleep. I am now panicking about not sleeping properly the night before we go…….how bloody stupid is this? If I keep worrying about it, it will become a self-fulfilling prophecy. Thank god I can function on the minimum amount of sleep and I think the adrenaline alone will keep me going for this trip next week.

 

 

Next week is going to be quite hectic with our trip to Stoke-on-Trent and both of our birthdays. So if there is no blog post next week you will know why, it’s because I am utterly exhausted. I will try to get something out even if it is just a photograph from the day but I won’t be pushing myself. I am sure you will understand as I will be recovering from my trip of a lifetime.

 

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.

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.

Rainbows and Unicorns

I am going to let you in on a secret, I don’t shit rainbows or unicorns. Nor do I manage to spend everyday with a grin plastered on my face. Life with chronic illness is not something I tend to smile about and yet again it seems the old disability porn meme is doing the rounds on Facebook. The one that says “the only disability in life is a negative attitude”. I would love just one of these idiot posters to spend 24 hours living my life and see how positive they feel.


I have been staring into the abyss for a while now, for a few months I have been trying to kid myself that my mood would get better, that I would indeed get a good nights sleep and things would improve. I have practiced every self-help technique I have ever been taught but currently I seem to teeter between a feeling of raging premenstrual syndrome (ANGRY RACH!) or sadness, the kind that makes your heart ache. I would love to be melodramatic and say I have spent days in tears, I haven’t, I don’t have the energy for it. I did have a couple of days of easy tear shedding a few weeks ago when hubby was on holiday and that was only after I confessed to how bad mentally I was feeling.


I have written about my battles with depression before, I had smugly thought that I had won and I would never end up back there. How wrong I was. Since August I have faced a battery of testing, a muppet of a consultant (the one that told me I was spending too much time on the internet looking up syndromes to have) and a new diagnosis to add to my ever-growing collection of the ones I already own. It’s funny how the diagnosis or a new diagnosis can send you closer to the edge than you’ve been in a while. 


The absolute icing on the turd cake that is my life, was finding out that my driving licence had been revoked due to the diagnosis of Meniere’s disease. Despite the fact I get several hours notice of the attacks because they aren’t under control I am deemed no longer safe to drive. It grinds my gears (pun intended) that I know that there are many people out there driving who haven’t informed the proper authorities of their medical conditions. I know the DVLA are very hot on vertigo / blackouts now due to the terrible tragedy last year in Glasgow, where a refuse lorry driver crashed into pedestrians killing six (more info here). I understand why I am not allowed to drive, it doesn’t mean I have to like it.


Lack of sleep has also had a detrimental effect on my mental health. I haven’t slept properly since 2011 when hubby had his accident ( a drunk driver hit him, when he was on his way to take the dogs out). The crash also left me with a lot of anxiety whenever he has to drive anywhere alone, oddly enough his journey to work doesn’t bother me, just everything else. I am a bag of nerves whenever he leaves the house and make him ring me when he arrives at his destination. 

Pain has also been a major cause of lack of sleep, I tend to get breakthrough pain because I don’t move around very much whilst asleep (as in changing positions). Up until recently I was lucky if I got 4 hours at a stretch most nights, once every few weeks I would sleep 10-14 hours and end up feeling worse than after a 4 hours sleep. Not sleeping drags you down, it is terribly lonely being the only person awake for hours on end. Waking up at 3am means it is a very long day and there is no evening for me as I am back in bed by 7pm and most nights asleep by 8pm. 


All these things combined meant that no matter how hard I tried I just couldn’t lift my mood. I am a consummate actress around friends and family, no one would really know how bad I felt inside because for the short time I spent with them I could pull off my usual wise cracking self. If anyone suspected I wasn’t my usual chirpy self it could be passed off as feeling rough or being in pain. However I knew things were getting bad when I no longer really wanted to talk to anyone outside of my family. I have a habit of withdrawing deep inside my head when things are tough. I don’t make an effort to socialise because I can’t be bothered to pretend that everything is ok. I put off visits from friends and basically become pretty shoddy at staying in contact with people. Even with hubby I start to get very quiet, mostly because I don’t want to snap at him because the issue isn’t him its me. In the grand scheme of things what does it matter if certain jobs haven’t been done by my self-imposed deadlines? I become frightened to speak as I may give myself away. I hate feeling like a burden to people. Over the last few months I have felt more and more that I couldn’t ask for help until one day I couldn’t suppress it any longer.


When you have lived with depression, you learn the danger signs. They can be very subtle and can take you a little while to pick up on them but they are there. Mine started with getting less and less sleep, then the feeling of sadness crept in, one that wouldn’t go away. Then I start spending money to cheer myself up. It is usually gifts for others as if I alone am not enough to please them. Then the self loathing starts with a vengeance, I start feeling like I am a failure because I have put on weight (comfort eating and wacky hormones), ugly because of the new facial hair that has sprouted and the teenage skin I suddenly acquired. A failure in so many ways that my inner voice of criticism literally doesn’t shut up from the minute I wake until the minute I go to sleep. It is a lonely place inside my head and it seems so stupid to retreat there but then that’s depression for you.


Thankfully I have identified the signs early, probably the earliest I have ever done so. I would class myself as mildly depressed, there are no thoughts of suicide or self harm but eventually they would have surfaced if I had let it go on much longer. I have visited my gp, who I think would have guessed this was coming as on the last two telephone conversations with him I have ended up in tears. He has placed me on an antidepressant that is known for its sleep inducing qualities. I have only been on it a few days but I am already experiencing better quality sleep, the kind where you wake up and feel like you have slept. My mood has lifted a little, which could have been caused by sleeping better as the medication isn’t supposed to reach its full effect for 7-14 days. My gp did say to me he felt with a few decent nights sleep it would take the edge off and it has. When you haven’t had a refreshing night’s sleep in 4 years you forget what it’s like. I have been waking up in the morning and not feeling groggy. I can’t remember the last time I felt like that on waking.


I have to go back and see the gp in a couple of weeks, a basic check to see how I am feeling and if the medication is working. I have been told to ring him immediately if things aren’t going well. Things are ok, is all I can say at the moment. I am hoping in a few weeks I will be able to say things are good.


It’s very difficult when you have a chronic illness to be able to address depression by the normal self-help means diet and exercise. Mobility issues and pain mean all but the gentlest of exercise is completely out for me. My diet is very restricted and when you feel depressed you can end up bingeing on junk food in an attempt to make yourself feel better for the short amount of time you are eating it. At the moment I am not feeling like eating (probably the new medication) nothing makes me think “oh I fancy eating that”. I am still hungry but the desire to eat has gone, which for me is good as I don’t want to end up bingeing all the time. I have to eat three times a day due to the Betahistine so I force myself to eat then. The pleasure of eating has temporarily gone and I am ok with that.


One of the main reasons I shied away from asking for help from my gp was the stigma I have faced in the past with having mental health issues on my medical records. Too many doctors when I was struggling for a diagnosis saw the issues from ten years earlier and decided that my illness was psychological and not physiological. I didn’t want that happening all over again however there came a point where I realised I couldn’t keep trying to soldier on. Nothing was going to change unless I got help. 

So I urge those of you who are struggling right now to ask for help, there is no shame in saying you need assistance. Chronic illness is a lonely world to inhabit, many of the things that get me down can’t be changed but I can learn to adapt to a new normal.