Tinnitus

Not many people know that I suffer from Tinnitus. It’s not something I broadcast, probably because there is just so much else going on. I just don’t see the point of throwing this diagnosis into the conversation as well. Plus tinnitus doesn’t make me “unwell”, it is annoying and frustrating but it doesn’t make me unwell, other conditions do that. Plus when you have a list of invisible conditions adding one more of them doesn’t make any of them more believable to the casual observer. However many people wrongly assume that because I don’t really talk about my health ( other than here and my linked Facebook page ) that none of my conditions cause me serious problems. Which isn’t the case it is just that I have found over the past 12 years if I keep talking about them people become less sympathetic and then you get labelled as a moaner or that you are attention seeker. You really can’t win with long term health conditions.


 I think that is part of the problem though, many of us with Tinnitus don’t speak about it because unless you are talking to a fellow sufferer people just don’t get it. Tinnitus is a subject only the sufferer understands and is a poorly researched area of medicine. People just can’t envisage what it is like to live with a sound generated from inside your own ears day in day out. So when I read this short article online I really wasn’t surprised that one in seven Tinnitus sufferers has had suicidal thoughts. Link here. Despite the fact on the whole I am able to zone out the tinnitus there are days when it is impossible and even just a few hours exposed to the continuous noise can be enough to make me wonder if it is like this tomorrow, how will I get through the day? That thought alone makes you utterly miserable, we suffer in silence, well if only we could.


My tinnitus is hard to describe it is always very high pitched continuous squeal, what doctors describe as a ringing. I would have to argue with this as when I think of ringing I think of ringing bells or telephones. I don’t think of a high pitched constant noise that doesn’t dim or fade. There is no break it is there from the minute I wake until the moment I go to sleep. It is the reason why I always have the TV going, even if I am not watching it and at night I have the radio going. Silence is the enemy because silence allows the sound to become all encompassing and there is no distraction from it. Just writing this blog post has allowed my tinnitus to increase it’s presence because I have acknowledged it’s existence today.


The only way I can describe Tinnitus to the uninitiated is, think of a noise that you find really annoying or that really gets to you be it a burglar alarm, car alarm, a child screaming, nails down a chalkboard. Now imagine that noise on a loop, the volume never decreases and there is never a break, the noise is on a continuous loop. When there is no background noise like a TV / Radio / domestic appliances running the volume increases. Accompanying the noise for me is also a feeling of pressure in my ears. When it is really bad it can feel like someone is pushing their thumbs into my ears. Other times it can feel like the air pressure is changing but the air trapped in my ears has got stuck and can’t go any further. It is annoying but again it is something I can zone out from.


The first time I experienced Tinnitus I would have been about 17. As we stumbled out of the nightclub my ears were filled with a high pitched squeal. It had been loud in the club but I hadn’t felt uncomfortable with the noise. My friends also complained of the ringing in the ears but mine always seemed to take longer to clear. The closest I have ever got to hearing that sound was when there are explosions in dramas on TV and the main character is shaking their head and they put that high pitched noise on to resemble the ringing of your ears. If only they knew that was the sound I hear all day every day, at one volume or another.


As a youngster I had a Sony Walkman when they first came out….good god I sound old. Although I did listen to music on my headphones I was much more into listening to audiobooks, Kidnapped by Robert Louis Stevenson was a particular favourite. It was one that my paternal Grandmother gave me. I can’t remember the name of the person reading the book but I loved it and it would regularly reduce me to tears in a number of places from the sheer emotion contained within the narrators voice.  My parents were also very hot on the fact that loud music from headphones could cause deafness so whenever they felt that my Walkman was too loud they would get me to turn it down. So I wasn’t one of these people that had headphones blaring all the time leading to tinnitus in later life. In fact if anything I am very sensitive to noise and I am always telling Mr Myasthenia Kid to turn the TV volume down! 


Having done a very quick search today looking for a link between EDS and Tinnitus many articles state there is but don’t say why. Tinnitus is given around one sentence whilst other symptoms are discussed at greater depth. That seems to be the case with Tinnitus very little research or thought has gone into it over the years let alone its connection to EDS. Obviously with EDS affecting collagen there are bound to be issues with hearing etc but many doctors even hospital consultants seem to be unaware of this issue. It can’t just be me who is suffering from EDS and raging tinnitus. In this patient information leaflet about EDS it simply gets the one word as in Tinnitus. Read it here.


Apparently I am unusual in that I have Tinnitus in both ears. I had no idea that was unusual until the audiologist told me. I have lost around 10% of my hearing and I was offered hearing aids as a way of blocking out the noise of the tinnitus but I declined. However I am having more days where the volume of the tinnitus is becoming louder making it harder to zone out from it. So it maybe something I consider sooner rather than later…if you can still get hearing aids on the NHS. Knowing my luck they will only give me one, even with both ears affected.


I do remember one of my ex friends suffering from a bout of tinnitus once and almost losing the will to live due to it after just a few hours. She did have a very low capacity for pain or anything that made her life deviate from it’s usual course. Oh and a taste for the melodramatic. Whilst I sympathised at the time I did point out that this was something that many people including myself live with day in, day out and she should really pull herself together as the chances were she would wake up tomorrow and it would be gone. I was right, thankfully hers did pass but it did make me realise that some people just don’t realise how good they have it if they fall apart at the slightest impediment to their day. How on earth would they cope if they developed a serious health condition? I have no clue but I am sure the rest of us would hear all about it.


I know I am lucky that my go to coping strategy has always been “ignore it”. Unless something is causing me pain or interfering with my life in some way I will barely give it space. I am a firm believer that acknowledging somethings gives them power over you. As in like today, my tinnitus had been at its usual level all day but it wasn’t until I read the article and thought about my tinnitus that it’s volume ramped up and I became aware of the feeling of fullness in both ears. When things have no way of getting better and aren’t a serious issue for me just getting on with life has always been my go to. There are so many things wrong with me that if I let each little thing impact me I wouldn’t get out of bed in the morning. I don’t say that to be some sort of hero as there are plenty of other people much sicker than me that are practising the same way of going about their lives. Ignore it until it gets so big that we can’t ignore it. Only pain and vertigo ( oh and low blood pressure – I mean faintingly low blood pressure) will stop me in my tracks. Everything else I will push through.


Obviously never ignore any symptoms that worsen suddenly or are new to you. If they are concerning you always get them checked out by your doctor.


There are days that Tinnitus gets me down, there are times I would give my right arm for silence. I haven’t known silence for years now, I would like to be able to hear quiet sounds without the Tinnitus masking it. I am very lucky that is really the only impact it has on my mental health. But  can quite understand if Tinnitus is impacting your livelihood or passion that it would have a much bigger impact on your life than it does mine. I can totally understand why it would provoke suicidal thoughts. On the odd occasion where my tinnitus is so loud it is preventing me from hearing anything else I have had a thought flash through my mind of “shit what if this doesn’t go and is like this everyday now?” I know I couldn’t cope with that. Thankfully it has always dropped back to its normal level at some point during the course of the day.

I have no magic words of wisdom on this subject, only that you aren’t alone if you suffer with this condition.

Raynaulds Phenomenon / Syndrome / Disease

My memory is shocking, particularly over the last year so I can’t remember if I have written about this before or not. Last night when we got home from dog training ( sat in an open Barn with temperatures just above freezing ) I took off my gloves to find my hands looking like this.

The photo was taken at least 10 minutes after we got home, as I suddenly thought whilst taking my make up off, “I really ought to take a photo of this because this isn’t normal”. When I first took my gloves off my fingers looked like they had been scalded they were so red. What shook me was the straight line just beneath the knuckles on my hand ( which had gone by the time the photo was taken) but you can sort of see the remnants of on my left hand. It looked so strange that I couldn’t help but keep examining them. It was only as I finished removing my make up that I realised that a photo could finally prove what I have been telling doctors for years, that I have Raynauld’s Phenomenon / Syndrome / Disease. For years I have had this condition mildly but last year it  ramped up a gear, weirdly being at its worst during the months of July and August – the height of summer.

My hands took an age to warm up, well the whole of me did. My legs were frozen despite wearing tights under my jeans, a long coat, knee high Dublin River Boots and multiple layers on my top half. I also sit with a blanket over my legs to ensure I stay warm. So its not like I don’t dress for the weather. I have even been known to secret a hot water bottle on my person during the lessons.  I hadn’t been uncomfortably cold until the last 10 minutes of the lesson. I had been crocheting all the way through but had to give up as my hands had really started to hurt and become difficult to manoeuvre. It took a good 3 hours in bed with my electric blanket on it’s highest setting to warm my legs back to normal. I have been the same after being exposed to changes in temperature ( it doesn’t even need to be cold weather) for as long as I can remember. When we had a bath ( we removed it as I wasn’t safe climbing in and out) I would get in it after walking the dogs ( when I was well enough to) as even when I had been walking, well wrapped up for an hour, my legs would go white and become like blocks of ice. 

My legs have always been the most painful when exposed to drops in temperatures. They take hours to warm and it is very painful. When I say drops in temperatures, I mean even the slightest things like a cool breeze on a summers day, the sun hiding behind the clouds for a few minutes, being caught in a blast of cold air from the air conditioning. These are all enough to set me off. It has come to the point now that when travelling in the car no matter how short the journey, I have a blanket over my legs. It is the only way I can limit or stop the pain the drop in temperature will cause. It also stops the rows with my husband when on a sweltering summers day I am begging for the air conditioning to be turned off in the car as the draft it is creating has set my legs off.

I have spoken to my doctors about this for again, as long as I can remember. I am greeted with blank stares. They can’t explain it or they just decide it is just another one of my myriad of weird symptoms that are possibly all in my head. You know with me being female, I am obviously bored and just crave attention from the medical profession. I love being poked and prodded wasting my days in hospital. Honestly who enjoys that shit ? So as usual when I am greeted with blank stares or the refusal to acknowledge the symptoms I just leave it because life is hard enough when you have the diagnosis of PoTs and EDS. For many doctors that just translates to hysterical female patient. They don’t believe it until they see my heart go nuts on a monitor with the slightest of postural changes or after they have seen my bendy body tricks. Some of them can’t understand how someone can be in pain all day everyday, with no break. Well I am here to tell you it’s possible, only because I know no different. I can’t understand how people can not be in pain everyday or wake up feeling like they have slept. I just can’t remember the last time I felt like I had slept.

For years my hands have been going pale and my nail beds would go blue. I have even had it where one hand is a normal colour and the other is paler with dark blue nail beds. I have even shown doctors this and been told I just have poor circulation. Which yes I agree with due to PoTs I do have poor circulation. But they mean peripheral circulation not whole limbs, like legs.

This last summer I started noticing the tip of my nose kept going white. It was so white you could see it through foundation. It looks like I have drawn a white heart onto the end of my nose. Then when the whiteness goes my nose goes a deep red and starts to sting as the circulation comes back. Now it is quite difficult to capture photos of the tip of your nose going white so you will have to bear with me, with these. However it is more obvious in the last photo with how white it has been when my nose flushes red.

The 2nd and 3rd photos were taken 5 minutes apart. The first photo was taken the day I had first noticed how white the tip of my nose was. I also had a bad hormonal breakout when these photos were taken! thankfully since changing up my skin care regime and taking some supplements my skin is much clearer although I still get the odd breakout – menopause related.

My ear lobes are also prone to becoming ice like and white – but its almost impossible for me to get a photo of my earlobes and it doesn’t always happen when hubby is in the house or that I can be arsed with getting a photo. I mean it’s not as if I haven’t got any other health stuff going on.

With this possible Raynaulds ( I say possible because I am not going to self diagnose although I believe that’s what it is ) it is the pain it causes that is the most difficult thing to deal with. It’s what I call a down to your bones pain, no pain relief will help it just never has tackled that pain be it morphine or paracetamol. The only way to get on top of the pain is to apply heat. Which means if you are out and about and have no access to hot water bottles or an electric blanket the gnawing, throbbing deep in your tissue pain it will just get worse. Which means by the time you can apply heat it will be hours before the pain is under control. Get  exposed cold again, even just a little bit within the next 24 hours and expect it to all flare up again as bad as it was initially. That is the situation I am currently dealing with. On top of being tired from last night which then impacts my ability to maintain my body temperature. So I am now wrapped up indoors like any normal person would be for venturing outside the house. Very shortly I will be getting out my heated throw so I can cover my legs with that as they are resembling blocks of ice. 

It is just yet another thing that is escalating on top of all the others. 

For more information on Raynaulds Disease

https://www.sruk.co.uk/raynauds/what-raynauds/

Reflections

The start of a new year always makes me a little reflective. I always think that now I am in my forties I should have my shit together. When I was a teenager people in their forties all seemed to know what they were doing, were confident and self assured. Now I am in my forties I realise like everyone else my age that those forty year old’s I admired were just winging it. No one has got their shit together and we all are just making it up as we go along. All that those 40 year old’s had that I didn’t as a teenager was life experience. I don’t think there will ever be a eureka moment in my life where I feel like I have figured everything out. I think I will forever be winging it and pretending that I know what the hell I am doing.

As you get older I do think you appreciate the simpler things in life. You put home, happiness and friendships above the material things. You also start to refuse to put up with so much crap or maybe it is you finally get the courage to start putting yourself first for a change. At the end of last year I made some quite sweeping changes. I reassessed some relationships, I binned some, I reinvigorated others. I pushed myself to make an effort with those I didn’t want to lose. It is funny during the hard times you really notice who runs towards you and who runs away. And there is the third group of people those that in public or on a public forum make all the right noises but do nothing practically to help.I have noticed this a lot over the last 4 years.

 Those of you who follow the blog or know me personally know that basically over the last 4 years Mr Myasthenia Kid and I have been to hell and back. Briefly ( which is a laugh as even briefly so much has happened each event is a blog post in itself) in 2016 I developed a CSF leak which left me confined to my bed for much of the year and if not in bed lying down. It made socialising very hard, several of my friends were wonderful but one in particular would make all the right noises you know the “just let me know if you need anything” and when you did ask you were met with radio silence or a long list of excuses as to why they couldn’t help. I will never ever be able to repay Imogen for how she helped us during that year, looking after the dogs at the drop of a hat for 8 hours whilst I got treatment at a hospital an hour away. Same for my parents who when Imogen couldn’t help would come up and drive me back down to the hospital a journey of over 100 miles. 

In 2017 we lost our dear friend of over 20 years, Andrew, in a car accident, his passing made me realise I needed to make more of an effort to stay in contact with my friends as none of us are guaranteed a tomorrow let alone a next week. In this year I also lost a family friend of many years who I would have regular conversations with via Facebook Messenger and telephone calls, although we never met in person. Later that year I was to learn my Grandmother and my dear friend Pam ( my neighbour twice and the person I saw most other than my husband) had both been diagnosed with lung cancer, Willow our 11 year old Weimaraner passed away on December 15th and it broke my heart. Due to the events of the following January I don’t think we ever mourned her passing properly. Both Imogen and Heather rushed to my side that day. Another friend offered but I realised at that point that I didn’t want her there at the time I was surprised by my feelings but let it pass thinking it was grief.

In January 2018 we lost both my Grandmother and Pam, despite knowing that both their diagnosis had been terminal we had lived in a bubble that it wasn’t going to happen. I had many conversations with Pam, she moved between despair and complete denial. It was emotionally hard going for me, which probably sounds quite selfish and self absorbed but I challenge anyone to listen to your friend of over 20 years talk about the fact they are dying and walk away untouched. Pam passed away the same week Andrew had a year earlier, which I have always found quite bizarre, especially since Pam had accompanied Jay and I to Andrews funeral less than a year earlier.

 We had no idea then at the ticking time bomb that was contained within Pam’s body. Looking back now there were subtle signs that something wasn’t right, she had looked really tired all the time etc a whole heap of little symptoms that added together were something deadly. Even if we had known then I doubt much could have been done but it makes me angry that mistakes were made in her care and the people that made those mistakes have got away with it. 

When Pam passed away both H and Immie rushed to be by my side again. The other friend basically told me she was coming, despite me saying that she wasn’t needed. It was uncomfortable, for everyone as it was like there was a cuckoo in the nest.  I didn’t know why I didn’t want her there, I just knew that if I was hurting she was the last person I wanted present. I should have listened more to what I was feeling and realised that those feelings were a huge red flag. But instead I blamed myself, telling myself I was cruel and unreasonable to be feeling like that. 

Reflecting back on the situation the lesson I take away from this is don’t ignore those feelings / intuitions / gut instincts. If I hadn’t of ignored them I would have saved myself another 18 months of being treated like shit and only being visited when she thought other people may see her doing it. It was very much a keeping up appearances situation.

There are still a lot of emotions to process from the January of  that year. I haven’t stopped crying since starting to write this and the grief has come out of nowhere as I certainly wasn’t feeling sad before I started writing today.

In the July of 2018 my mum was diagnosed with ovarian cancer a very rare type at the same time I had stuff going on in my life that was extremely stressful. I was already suffering from terrible anxiety and depression after losing by now 5 people from my life and one dog ( in the February I lost a school friend who I had known from the age of 11 and we used to have regular chats on social media, just last night I thought I must ask Jon what planet I can see in the nights sky currently, as Jon had bought himself a telescope not long before he passed – totally unexpectedly and I had to remind myself that he isn’t here). I struggled to get up and out of bed as the stress was doing a real number on my chronic health conditions. I was passing out frequently and had issues with ptosis. The heat of the summer didn’t help either.

My mum then had major surgery in the August, in the September we had good news that although what had been removed was cancer, it was tiny, the size of a pin head and very unlikely to return. She is currently in remission, no one is cancer free until they have been 5 years clear. She has regular checks at the hospital and will do for another 3 years.

I finally thought that we may get some peace, after all what the hell could happen to us next? Surely the universe was done toying with us now? But no, 2018 was going to end badly and 2019 wasn’t going to start any better. On 29th December 2018 we lost our beloved boy Frankie aged 12 ( a Weimaraner) and his Mum Mollie (Weimaraner) followed him over Rainbow Bridge exactly a week later on January 5th 2019 aged 14. Both had incredibly long lives for the size of dog they were but at the time it felt like my world had imploded. I had spent every day with my dogs since 1st June 2008 ( except for hospital stays ) They were a huge part of my life and most of the time the only company I had except Jay.  I didn’t know that I could be in such emotional and physical pain and yet still wake up day after day. I thought Mr Myasthenia Kid was going to drop dead from a broken heart he looked so fragile and  broken. Even with Dembe our Labrador puppy coming into our lives on January 11th 2019, we were struggling.

This was where I noticed this friends  persons absence even more, no messages checking on how I was doing. No card, no flowers, no visit. Yet again H and Immie were there by my side, along with Paul, Pam’s partner. I will be forever touched by Paul coming over on the Sunday after Frankie passed and then coming over again the following weekend when Mollie passed. He sat and shed tears with us and told us not to worry that Pam would be looking after them until we all met up again.

 I had cards and flowers from friends and cyber friends and yet no call to check how we were, beyond the initial messages of me telling you what had happened. That is when the penny finally dropped, that when I needed you, you disappeared as you had done so many times before, unless there was an opportunity for you to be seen as a “good” person. There were so many people I only knew on Facebook who came to visit to check that we were ok or who messaged me out of the blue. I have never felt love like it, so many people hugging us, looking out for us, physically being present. 

When Dembe arrived oh my goodness, so many visits. I have never known a puppy get so many toys and presents. I had baby gates offered within minutes of me asking on Facebook if I could borrow some, the same with crates etc. Nothing was too much trouble for people. It was overwhelming and it was something I have never experienced before and I am so touched by all those people. However it made this persons lack of action / concern even more painfully obvious. That hurt, even with all the pain I was in already the fact that we could all be so easily forgotten was another huge red flag.

Initially I made excuses,  maybe I hadn’t said I was struggling? Maybe you didn’t realise I was grieving? Maybe you didn’t understand the depth of my grief? But even to the village idiot it would have been glaringly obvious. Contact over the year became less and less. It felt more and more like it was one way traffic which indeed it was. I was lucky when I messaged you if I got more than a couple of sentences out of you. Again I made excuses, you were busy with your new life now. You certainly made me feel like I was interrupting you living your best life. When it got to 4 months since I had last spent any time with you and even longer since we had spent any time alone, the decision was made. I had waited a month at that point for a message to be answered. I snapped. I was faced with the prospect of you turning up on my birthday and I knew I couldn’t pretend for 5 minutes let alone several hours that everything was ok and that I was grateful for the few crumbs of attention you had thrown my way.

You would have never put up with being treated like that by anyone, yet I was just supposed to accept this? The last 2 years had passed in a haze of grief but I was starting to feel stronger. I knew that your behaviour  was now emotionally damaging to me. I couldn’t move forward if I was going to continually wound myself, wondering what I had done wrong, why I wasn’t good enough or why you felt you could take advantage of my good nature. So I ripped the band aid off and called time, reasonably amicably. I had been hesitant about hurting you when it was clear from your actions you had no concern about hurting me.

I suppose I am reflecting on all this as that is what the new year does. December and January are full of anniversaries of people and pets passing they are hard months. It’s only now on 22nd January that I feel like the weight has been lifted . That I realise that the last few years I have been operating / functioning with a low level depression going on in the background. That the anxiety has lessened enough for me to see things clearly.

 You had changed or maybe the real you had come to the surface? Perhaps I chose not to see the real you or the nasty comments you made on a regularly basis. I put those down to you being verbally clumsy despite the fact you claim to be a writer. I realised I had put up with far more than I had ever credited myself with. I was right to call time and that belief is unshakeable now. I’m not the only one that has noticed that you have changed, grown colder and more bitter than you have ever been. I feel sorry for you as your world is shrinking and you are so full of yourself you can’t see it. One day you will come crashing down to earth with a bump and you will be all alone. Maybe you want it that way, so you can perpetually be the victim?

I reflect back and realise I should have found the strength earlier. That I should have seen the pattern that I could never depend on you. That you liked to take and use, yet giving absolutely nothing in return.  You may think you have everybody fooled but truthfully more and more of us are seeing through you. I hope you find some peace because only someone who is utterly miserable with their own life finds joy in hurting others.

DRI’s

Having a puppy is fun, they are cute, adorable and bundles of energy. They also have the capacity to be incredibly clumsy. I am constantly covered in bruises from what we refer to as DRI’s – Dembe related injuries. Currently I am sporting a bruise on my chin that goes onto my neck, that one is from where he smacked his head into my chin climbing onto my lap during a break at agility training on Sunday. It was only yesterday ( Tuesday ) that I noticed the bruise…. just goes to show you how much attention I paid to myself from Monday through to Tuesday at 6pm. My chin was sore but not sore enough for me to bother looking. It actually just looks like I have smeared dark eye shadow across my face. I just wish it felt like that. As you can see it has made a bit of a mess. Thankfully with my head in a normal position its not really visible.

I have really noticed that I am bruising much more easily since stopping my contraceptive pill back in December. I sported a similar bruise in the same location that turned a lovely shade of yellow in the week leading up to Christmas. That again was a DRI, caused by him running through the tunnel at agility training and barrelling into me with excitement. I hate the fact I mark so easily. The way I injure myself by doing the simplest things is just so frustrating. Just Dembe climbing onto my lap is enough for me to come out in bruises up and down my thighs.

Some of it has been caused by puppy exuberance, which is to be expected. Back in December 2006 Willow ( Weimaraner ) managed to slash my eyelid open ( completely so you could see the yellow fat beneath the skin ) . All she did was bat me with her paw as we were playing. Her nails were razor sharp and that was enough to tear the delicate skin of my eyelid. As I couldn’t get the wound on my eyelid to close, weirdly there was very little blood, I ended up having to get Jay out of work to take me to the minor injuries unit so I could have my eyelid steri stripped together ( paper stitches ) . I had to wear those for a week, thankfully the wound closed beautifully and bizarrely for someone with EDS there is no scar. Normally I heal really badly and get strange looking scars, thankfully with this it didn’t happen.

I forgot to mention as I was putting my shoes on last night Dembe managed to poke me in the eye with his nose. I am still trying to work out how the hell it happened and it bloody hurt having your eye ball prodded by a 30 kilo Labrador. I was minding my own business when he came up and did it. So it isn’t down to me being clumsy that these injuries are occurring. Sometimes the injuries are my own fault as I have been playing with him and have got him too excited so he then moves around without thinking. Bless him as soon as I yelped last night and put my hand to my eye, he rushed up onto the sofa and was trying to kiss me to ensure I was ok and he wasn’t in trouble. It is very hard to ever be cross with him when he is just so bloody cute.

I have to be really careful when Dembe is excited as he is like a very exuberant toddler chucking himself around. He is so funny as his whole body wags along with his tail when he is very pleased with himself. His ears go flat to his head and he likes to parade around with whatever toy it is he has in his mouth. He loves to clamber up on to my lap no matter where we are. He has always done this at home but on Sunday for the first time he did it at Dog Agility training – which is where I have got my bruise from and in a break last night during obedience training he decided that he needed a cuddle from his mum and made himself comfortable on my lap, much to the amusement of everyone else in the room. The fact that he is 14 months old this week and no longer a tiny pup seems to have passed him by. As the dog trainer said last night “mum why has your lap shrunk?”

By far the worst DRI I have received to date was my eye injury in April, April Fools day to be precise but this was no laughing matter. Again it was a total fluke kind of accident and about 80% my fault as I had been playing with Dembe and messing about, bringing him up to fever pitch. How this didn’t end up more serious than just a flesh wound I have no idea. I only managed to close my eye at the very last moment.

I shudder to think the damage that could have been done had my eye been open and he had dragged his claw against my eyeball. This one hurt a lot and I screamed, poor Dembe freaked right out and ran upstairs into my bedroom and hid. Despite the fact my wound was bleeding and it was just sooooo painful, I slowly made my way upstairs to console Dembe and ensure that he was ok and he knew that everything was alright. The thought that my scream had upset him was far worse than the DRI I had endured. Of course as soon as he knew it was all ok he showered me in kisses. He hates to think that he has done anything to displease you or hurt you. In that respect he is very self aware. Its just a shame he is such a bloody clutz….like me!

Just quickly as I bring this blog post to an end my trapped nerve in my neck has come back and it is worse than ever. I see the physiotherapist next week. I haven’t seen her for far too long. You’d have thought with all the sewing I was doing in the run up to Christmas it would have flared up then but there was absolutely nothing. I got out of bed one morning last week, turned my head and bang it was back. It is the first time it has come on like that. So I have spent quite a lot of time in my soft collar trying to help lengthen my neck and un-trap the nerve. 

Happy New Year 2020

Welcome to the first post of 2020, doesn’t it just sound so weird 2020? I keep expecting someone to add in the word vision. This year will mark our 20th wedding  anniversary, it will also be 23 years that we have been together as a couple. How on earth did I get so old to be celebrating 20 years with someone. At 46 it now means that I have spent half my life with Jay and scarier still that 50 is looming ever closer! 

A New Year can make you sit and take stock, it brings about all the New Year New Me bullshit but for those of us facing some bereavement anniversaries the only thing we ever want to do is just get January over with. The first anniversary of Frankie and Mollie’s passing was far harder than I could have ever imagined. I spent both days in floods of tears pretending I was ok to Mr Myasthenia Kid so he didn’t worry about me whist attempting to deal with his own grief. The day after Mollies anniversary it was the 2nd anniversary of my Gran passing and this year it hit me harder than the first. 

There have been so many times over the last 12 months I have gone to ring her and got as far as picking up the phone only to suddenly realise she is no longer with us. I still haven’t deleted her number from our phones, it is the same with Andrews. Towards the end of this month marks three years since Andrew passed away and his number is still the first on both mine and Jays phone, along with the home phone. In the same week it is the second anniversary of losing Pam, one of my oldest friends I made in Exmouth and my next door neighbour twice. It would have been her birthday the week before. So as you can see January is an exceptionally shitty month for Jay and I. A month where we grit our teeth and try to just get through it.

Thankfully this year we have signed ourselves up for training courses for Dembe, so last night we had our first session of the advanced class. Dembe did really well and we got a bit of one to one time at the end with the trainer Martin as we are trying to get Dembe to walk, next to the mobility scooter with me holding the lead. I find this nerve wracking as I am always terrified that he will get too close and I will run him over. This bit of training is as much for me as it is Dembe. We do love going to training and Dembe enjoys it too. On Sunday we will be going to Agility Training for Non Beginners, this is a fun course which leads on from the agility course he did last year. He enjoyed it so much particularly the tunnels we decided we would do the next one on. It also gets us out of the house on Sunday and Dembe just loves going and doing something different. Our whole lives revolve around him, making him happy and providing a stimulating environment for him.

Thankfully we had a lovely Christmas despite knowing what the end of December and the whole of January would hold for us, with all those anniversaries. We received a truly wonderful gift from two of our friends, I burst into tears when I saw it ( I am blaming the menopause for ability to cry at the drop of a hat at the moment). It now has pride of place in our lounge and we have since added some more photos to the wall around it.

We were both so very touched by the thoughtfulness behind this gift. It contains a photo of ( going left to right) Willow, Mollie, Travis. Frankie and then Dembe at the bottom as a tiny pup. I can’t believe that this Saturday will mark the end of his first year with us, what is known as amongst dog people as his Gotcha Day. We will be celebrating his Happy Gotcha Day and we thank our lucky stars that we have such a wonderfully affectionate dog as Dembe.

Dembe was thoroughly spoilt by our friends this Christmas, it was crazy the amount of gifts he got and we are incredibly grateful to everyone who got him something. We certainly didn’t expect it.

Not in the photos, his Uncle Paul also got him a new food bowl, Sam gave him a tin of sardines which he had for breakfast Christmas morning, some tennis balls and a bone shaped chew, he also got bags of treats from various people as well. He was a very lucky little pup. We got him the huge tugger you can see in the photo, along with the grey puppy. We also got him a pop up tunnel which he went through twice on Christmas morning but has flat refused to do it again. We are hoping after Sundays agility class he will be happy to go through it again.

I planned to do as much of a #memadechristmas  as possible. At times it was incredibly stressful, wondering if I would manage to get it all done. I did and thankfully all my gifts were really well received. I also made the majority of Jay’s gifts, which was a bit of a nightmare as I am useless at keeping secrets and nearly gave the game away on so many occasions. Also I was using the day time to make presents for family and friends, whilst at night in bed when I was watching TV or couldn’t sleep I was crocheting him a hat and scarf set. I can’t remember if I have said anything on my blog about the fact I have been teaching myself to crochet since November 2nd. When Jay opened his hat and scarf from me, he didn’t initially believe that I had made it. The only way I could get him to believe me was to ask him to find the labels on them. He was thrilled with them both.

As he worked Christmas Eve I let him open one present from me, purely as I couldn’t wait to see his face. This was another gift that I had been working on in secret, a quilt made from a pre-printed panel ( so not cutting / patchwork ). He had seen this panel on several occasions when it had been featured on the now defunct Sewing Quarter tv channel, every time he had raved about it and what a lovely quilt it would make. I purchased it in secret and then when I could worked on it. He was over the moon with it.

Christmas was a bit of a Dembe and Daddy “love in” which was a gorgeous to see. Dembe loves it when his daddy is home and makes a real fuss of him. He is my dog but he loves his daddy very much as well. I managed to get this shot of them on Christmas morning

Dembe sat on Jays lap as often as he could during Jays time off form work. They really are devoted to each other.

I had some really lovely gifts from friends and family. I took part in a Secret Santa organised in a Facebook group I am part of and received a pattern – The Humbug Bag and some beautiful fabric ( and some zips).

From Jay I got a little travel iron – which I had asked for to help me when I need to iron small pieces of fabric or small seams on quilts. Ironing is a bit of a nightmare for me so anything that makes it easier for me is brilliant, I hate having to wait for help. I also got two books on crochet,

And I have already made a small dog from the book – a weimaraner, it looks dog like but not Weimaraner like but that is down to my skills at crochet that need a lot of practice.

I am currently working on a giant Labrador made out of chunky wool. It is HUGE! Dembe keeps barking at it as he wants to play with it. Currently it is limbless and ear less, although I have embroidered his nose on. Which is what is probably making him bark.

We got so many lovely presents we really are very lucky to have such lovely friends who spoil us alongside our families.

Even with all the gift making I managed to gift myself this Christmas Quilt which I made on my embroidery machine. I am very proud of it as it is the first quilt I have done on it and until October 2019 I had never done applique on my Embroidery machine as the thought terrified me.

I was very sad when my quilt had to be packed away along with all the other Christmas decorations but I am really looking forward to getting it out again later on this year. 

I hope that those of you who celebrate at this time of year had a wonderful time. Wishing you better health, happiness and peace for 2020.

 

Merry Christmas 2019

Normally at this time of year I would take a long look back at the previous 12 months and do a summary of all that has happened. This year however its more of a case of 2019 don’t let the door smack you on the arse as you make your way out. The year started with the lowest of lows and has ended with some highs. I must truly count my blessings as some of us haven’t made it through this year and will not be seeing 2020 in. It is sobering when a person you have known through social media passes away and at the tender age of 25. It makes you take a breath and realise a lot of the stuff that pisses you off is simply #firstworldproblems.

 
 

 
So to move onto happier things here is a photo of my dear handsome boy Dembe who is my world. He has brought us so much joy in what could have been an utterly awful year. He is also the reason why last night I found out I had won a hamper of dog treats worth £80. I entered a quiz as the company we use to help us train Dembe ( and train us) Happy Dogs was celebrating 15 years of being in business this year. The first prize winner couldn’t collect the prize so I was awarded it. It was a lovely surprise in a year where I have won quite a few things weirdly. I have never known a year like it for competition wins. I have won a £10 tropic skincare voucher, a bottle of Super greens skin oil by Tropic for myself and a friend ( worth £42 a bottle), I won in a prize draw on Instagram a set of three thread glosses for hand sewing that have Christmas scents. I have also had quite a nice year with the lottery having one win at £140. So I would normally say I was an unlucky person but the facts actually show me it is the complete opposite. I have some dreadfully unlucky things happen but in the grand scheme of things I can’t complain at my haul.
 

 
 

 
 
 

 
I have also been gifted vast amounts of fabric this year by my cousin Juliet and two ladies who I am friends with on Instagram. I have been bowled over by peoples generosity which is why this week I have donated 8 Christmas stockings to children who need some Christmas cheer. This has been done through a Facebook page I am part of called XXX ( name of our town) Friends in need. We support families who have fallen on hard times mainly due to the implementation of universal credit, people donate items to the page, if you take an item you pay for it with food / grocery donations to Claire who runs it. My second hand lounge curtains that I simply adore came from this page. I donated back our old lounge curtains and got Jay to drop them off to the lady that wanted them. It has also been a good way to recycle items and prevent them going to landfill, whilst also helping those who need our help.
 
In the new year Jay and I will be going through the house including the loft and having a massive sort out. We will be donating what we can to the page so that families may benefit from it. It is a sad indictment of our times that people are living in poverty unable to feed their children in a country that is either 5th or 6th richest in the world. Whilst all the time the media portray those living on benefits as living in luxury and being scroungers. What I love about the friends in need page is no one judges and if they do Claire swiftly boots them from the page. Unfortunately due to the election result there will be more and more families that need our help. People really do need to remember that these days most people are one illness / accident away from poverty / losing their homes. That can’t be right and it shouldn’t be accepted with a shrug of the shoulders like there is nothing we can do. I always think there for the grace of god go I. 
 
Christmas will be a quiet affair for Jay and I as it always is. We do enjoy spending time with each other . He will be exhausted after the run up to Christmas, it is always nice just having the time to be with each other uninterrupted. 
 
As this time next week it will be Boxing Day in the UK ( 26th December for everyone else ) this will be my last blog post of 2019. A year which I can’t say I am sad to see the back of. I will see you again on 9th January, so I can have a break over the festive period.
 
 
So despite the tragic start to the year I am ending it on a happy note and feeling extremely grateful for everything I have and the people who are in my life  are those who want to be there and don’t treat me as an after thought.
 
Wishing you all a Merry Christmas and a peaceful 2020.

I am the face of invisible illness

On Saturday I posted this photo to my social media feeds. I had my Christmas jumper on as we were getting ready to take Dembe down to meet Santa Paws. 

Now this blog post is not having a go at anyone, it is just pointing out what people interpreted from the photo and what was actually going on. On posting I had a few comments stating how well I looked and that people hoped I was having a good day. They were really nice comments / compliments but the truth was I was in 7/10 pain with my joints ( that only eased up a little when sat perfectly still) and every so often I had a pain in my abdomen that felt like I was being stabbed. It just goes to show when other people think you look well there maybe a whole host of things that the few seconds in front of the camera didn’t show.

I am the face of invisible illness, unless I have ptosis or bruising / cuts on my face most people on seeing this photo wouldn’t know that I have been sick for the last 12 years. That I gave up my career due to being off work so much that I was ill-health retired. I don’t think I look very well at all in this photo. Yes I have some makeup on but I look as white as a sheet. To me I look shattered, I am putting a brave face on because all week we have looked forward to seeing Santa Paws and there was no way that I wasn’t going to accompany Jay and Dembe on this trip. I didn’t even tell Jay until we got home how much pain I was in.

When people commented that I looked well, I just said thank you. I didn’t want to have to say “well I may look ok to you but my pelvis, hips, knees and lower back all feel like they have been replaced with metal pikes and are grinding against the joints”. People ( many of my friends have invisible illnesses so get this) see a photo and decided that actually you can’t be as sick as you say you are. They are incredulous that I would drag myself out of the house when in as much pain as I was. I do it not because I am some kind of hero or that I am attempting to prove some kind of point, I do it because I want a life. I want to be able to do things with Jay and Dembe. Jay only gets two days off a week so if we don’t do stuff on those days then I don’t get to go out until the following week, it is as simple as that. Unless I was totally incapacitated I was seeing Santa Paws and getting Dembe’s photo taken. 

The problem with invisible illness is precisely that it is invisible. That means there are no tell tale signs that you can see that show that my autonomic nervous system is wonky, that I have Ehlers Danlos Syndrome or a host of other medical conditions that have come along for the ride. There are no neon signs above my head pointing out to the general public what is wrong with me. It isn’t just me that has to deal with not looking sick when they have a chronic health condition there are just so many of us who are fighting battles with our own bodies that most people have no clue about. It is exhausting and at times it feels like it is a constant battle to get people to understand or believe how much I am impacted by my medical conditions.

I knew why my joints were so bad on Saturday / Sunday / Monday and it was to do with the changes in air pressure with a storm approaching the UK. I spoke to another friend who has arthritis in her hips, on Saturday  and she was in pain as well due to the changes in air pressure. We laughed that we were so bloody predictable. I should imagine most of my chronically sick friends were also struggling with the increase in joint pain despite looking fabulous.

Our visit to see Santa Paws was thankfully very short, we were in and out of the shop in less than ten minutes. All in all I was probably only out of the house for a maximum of half an hour. As soon as we got home I was sat on my electric heated throw to try and provide some relief from the pain in my hips and knees because I was maxed out on painkillers and they weren’t doing anything at all. When my pain is related to air pressure pain killers just don’t work. The only thing that does is the application of heat, it won’t get rid of the pain completely but it will drop it down enough to stop me wanting to cry with it. 

Dembe had some wonderful photos taken.

He was a good boy and sat still for his photos. He does love a good face rub or an ear scrunch so Santa Paws hit the spot! 

Despite the pain the trip out was more than worth it when we looked at our phones and saw the photos we had captured. The bottom photo is the official photo from the shop that they emailed us. Even if I was in that much pain again I would still go out and get the photos done. Sometimes you just have to keep pushing so that you can get out of the house. I know for me there are times when I can’t get out of bed, the pain / exhaustion is just too much. I was lucky it was a day when I could push though. I would have been gutted if it had been a day when I couldn’t and we had missed this opportunity.

What the photo doesn’t show is from the time we got home ( around 10.30am) until 3.30pm I did nothing other than sit on my heated throw. I only moved when I went to the toilet. Jay got me my drinks and something to eat. I stayed in my little corner to recharge my batteries and to attempt to get the pain under control. A photograph doesn’t show you anything other than those few nano seconds it captured when it was taken. I wish more people understood that.

I am the face of invisible illness.