New Things

Six weeks ago I did something crazy. It had been in my head since before Christmas and I had been spending an age mulling it over too scared to say it out loud. It took until after Christmas for me to even say to anyone what I had been dreaming up.  One day I mentioned to my husband what my idea was, he assured me it wasn’t that crazy and that if I didn’t try I would never know.

To some this idea won’t sound that crazy at all but believe me it sent my anxiety into over drive. My big plan. my crazy idea, wasn’t really out there at all. I just wanted to start up a monthly coffee morning for like minded crafting friends who would like to learn new skills, solve a craft problem, get hints and tips etc. I will be honest  through 2019 I was a bit of a hermit, some of it self imposed, some of it well read my post Reflections and you decide. I was going months and I mean months without seeing anyone other than Mr Myasthenia Kid or Dembe. Ok so that is a bit of a half truth there as we were going to dog training but a 5 minute conversation once a week with someone other than my husband is not socialising. Especially when the topic is just Dembe or dogs in general. My mental health was being crushed, although creatively I had never felt so fulfilled as my sewing / embroidery had taken on a new direction. My anxiety was really getting bad around social interactions because I literally just wasn’t seeing anyone.

Chronic health conditions impact so much of my life, it limits the time I can spend doing it. I would love to run a small business selling items but my body couldn’t cope with the work load that something like an Etsy shop would produce. I can’t do craft fayres as I couldn’t sit there all day without then being sick and exhausted for weeks after. Crafting is my life it gives me the reason to get up and keep going every morning. Without it I would be very lost. However part of crafting is sharing your triumphs and disasters. Whilst there are various Facebook groups ( some of which are very supportive, others are like a nest of vipers) it isn’t the same as actually speaking to a real live human being. I can no longer drive as I lost my driving licence 5 years ago due to my medical conditions. Public transport is too hard going for me. I rely on Mr Myasthenia Kid if I want to go anywhere so attending guild meetings hasn’t been easy due to his work schedule. I wanted something that combined my love and appreciation for all crafts and a social atmosphere. So I took the plunge.

I knew the name I wanted for the group – “The Stitchin’ Bitches”, I also knew due to the size of my house numbers would have to be limited, if anyone wanted to come at all. A friend of mine reached out regarding a crochet issue she was having, we are both self taught and only in the last few months. I casually mentioned in my response that should I start up a group for us to meet and discuss our crochet ( and other crafts) would she be interested. She almost bit my hand off, she would be extremely interested in it and what a good idea. 

Even though I had this positive response I still left it at least a week until I built up the courage to put up a post on my Facebook timeline asking if there were any like minded crafter’s like me that wanted to meet up on a monthly basis and do crafts together. Be it crochet, knitting, embroidery, sewing. I had a lot of responses but it was from people in different parts of the country saying that they wished they lived near me as they would be there like a shot. Initially responses from local friends was slow, embarrassingly so. I was starting to think that maybe there wasn’t any desire from any of my friends ( other than the first one I spoke with). Determined not to take the lack of response from my first post as the definitive answer I posted several more times. Each time I got responses from people outside the area that I lived , even the friends I have made world wide via various health forums wanted to come. But in the end I had 4 people interested which was a good number – remember I live in a tiny house.

I set up a private Facebook group for us all to be able to post in and then set up a poll so that they could let me know what days suited them best to hold a meeting. I had envisioned when I first embarked on this idea that it would be one hour a month – which for me was fine as it would give me time to recover and give me some social time. We decided Mondays were best and set the date for our very first meeting of The Stitchin’ Bitches – they all loved the name by the way! I think we sort of sound like a Country and Western group LOL!

Initially it all seemed fine until my anxiety kicked in the day before our first meeting on Monday 10th February. I was just terrified that the meeting would be a flop, that people wouldn’t speak to each other or that after 30 minutes people would be racing to get out the door. I was so anxious I barely got more than 2 hours sleep, I tossed and turned all night. This would be me hosting an event ( thankfully all my friends know I am poorly and will pitch in with making drinks etc if needed)  without my safety blanket of Mr Myasthenia Kid. Also some of the people attending I hadn’t actually seen since I left work in 2008. For me it was a huge gamble. I am always really anxious when people come to the house anyway, I worry that they think it is dirty or uncared for etc. Its hard to keep on top of stuff when you aren’t well and all the DIY stuff falls on one partner. So I know there are some places crying out to be redecorated etc. I was also worried about people judging me, on the outside I don’t look sick but every day is a battle of some sorts. I worry that people think I am taking the piss because no one ever see’s me when I am really poorly.

Monday 10th February seemed to come around so quickly. By the time 11am arrived I was pretty knackered just from the sheer anxiety creating this “event” had caused. I really shouldn’t have worried. I also wasn’t the only one who had been anxious, a friend confided in me on leaving she had been terrified to attend. As for thinking they would all be racing for the door at 11.30am nothing could have been further from the truth. It was 13.30 that the last person left and the first person had only gone around 15 minutes before that. I had been concerned due to the fact that we all had one work place in common that we would end up discussing that but again nothing could have been further from the truth. It was barely mentioned and that was only as people left. It was just so lovely to have a few hours with people whose eyes didn’t glaze over when crafts were mentioned. I know I can get very passionate about my projects, so it was nice to answer peoples questions about the techniques I had used etc. It was equally nice to see what my friends had been up to. For all of us it was so uplifting to get out of the house and socialise – obviously I didnt go far!

The really nice thing was that as the meeting / gathering was drawing to a close one of the lady’s said “Rach, any chance we can do this once a fortnight? I don’t think once a week is enough”. Everyone else was in agreement also. I said immediately that no one would “have” to come to every session especially if they felt fortnightly was too much, that I was happy for people to dip in and out as needed. But the buzz the morning had created was so great that we set up the next few weeks worth of meetings. I was so proud of myself and what our little group had achieved. I posted on my Instagram account about it and now several other people dotted around the country have decided that they are going to do the same thing. Which is really lovely as it is such a boost for your mental health and to stop the isolation that is all too common in the world.

Today (Monday 24th March) we held the second meeting and today we had the grand total of 7 people here (including me). Dembe was like a dog with two tails, with all the love and fuss he got from everyone. Today two members learned how to start to crochet – slip knot, chain stitches and then double crochet ( UK ). Another lady had a refresher on crochet and learned how to do a Granny Square for the first time. In the corner a lady was being taught to knit. Mr Myasthenia Kid is on holiday this week from work and made himself scarce for a bit having a wander around the town. However he said the buzz and positivity he got from the room when he came home was amazing. He said he was so proud of me for being so brave to try and do something to end my own social isolation. He did make us all laugh as when he walked in he said “good god is this the budget version of the Playboy mansion”. Considering our age ranges were from 21 to 70’s it was hilarious. 

We were also spoiled by a new member who brought homemade scones, jam and cream for us to have as a crafting snack! And bloody gorgeous they were too. I had decided yesterday to make everyone little paper tissue holders as a way of saying thank you for coming and making it such a success. 

I can’t lie after every meeting I have been utterly exhausted. If I knew that it wouldn’t impact my nights sleep I would go for a nap in the afternoon. Mondays after are written off with me having a lazy restful afternoon on the sofa but mentally I feel so uplifted and happy. I am so glad that I pushed myself to do something totally outside my comfort zone and I hope I inspire others to take that chance and do new things.

****

On Thursday 20th February, I had the worst migraine I have ever had in my life. It was so bad that I am actually suffering from amnesia caused by it. I have “lost” most of Wednesday 19th, the majority of Thursday 20th, Friday 21st quite a bit is unrecoverable as is Saturday 22nd.  It is only from yesterday on-wards that I can recall anything that happened during the day with any clarity.  I won’t lie this has scared the shit out of me. Which is why I haven’t done a huge detailed blog post because basically I don’t know what happened to last week. I have a gp appointment booked because I need to know that this was just a horrific migraine and that I can be referred to see a headache specialist or if it was something like a TIA that can also be looked into. Having Google at our finger tips can be a curse and a blessing but as I can’t account for much of last week and this has never happened to me before with a migraine I can’t just ignore what has happened. Anyone who knows me also knows that I don’t run to the doctors every 5 minutes so it has really shit me up.

As soon as I know you will know.

The Best Dog

One of my favourite sayings about dogs is,

Everyone thinks they have the best dog.

And none of them are wrong.

W.R Purche 

Dembe since coming home with us on 11th January 2019 has proven time and time again that he is not just the best dog but an exceptional dog. Highly intelligent and intuitive especially when it comes to matters of my health. It started when he was very tiny. He would some how know that I had a migraine and would lie quietly beside me with his face pressing against the side of my face that was hurting due to the migraine. He wouldn’t leave my side unless dragged away. I just put it down to him being impossibly cute but there are so many instances over the last 12 months that have made me realise that his behaviour isn’t just a fluke but something very real.

Around 3 weeks after we brought Dembe home I came down with a chest and sinus infection. I was floored by it, it was probably the closest I have come to feeling like I had the flu without having it in a few years. Dembe would have been around 10-11 weeks old and full of beans. Due to the fact we were still toilet training him I couldn’t go to bed, I simply didn’t have the energy to be going up and down the stairs every 30 minutes ( I couldn’t have done that on a normal day let alone this). So I would lie on the sofa counting down the hours until Jay would be back home so that I could crawl into bed.

A pup of this age is normally a live wire, yes they sleep quite a bit but when they are awake they are into everything. Normally Dembe would have been, however he seemed to know that I was poorly. Instead of running around playing with his toys, for 4 days straight he would lie on my feet or chest up on the sofa and sleep, as I slept. At the time I thought it was odd that such a young pup would alter his behaviour so radically. As soon as I started to be on the mend the crazy pup came back and yes sometimes it was a little too much for me as I was still feeling pretty rough but to contain all that energy for 4 days whilst I waited for the antibiotics to kick in was pretty weird.

 At the time I just put it down to a fluke, that I was projecting and seeing what I wanted to see after losing my beloved nurse Frankie. 

There have been a couple more instances over the year, where it was clear that Dembe was picking up on health stuff to deal with me. We have had a couple of dog training sessions where Dembe has wanted to just get back to me where normally he will quite happily ignore me. One night I was sat quietly on the sidelines when I suddenly lost the vision in my right eye, I knew I had a migraine brewing but as there was only 30 minutes left in the lesson I didn’t see the point in making a fuss. In the end I did have to speak up though as Jay and the trainer couldn’t understand why Dembe wasn’t focusing on the lesson like he normally would and all he kept doing was looking back at me or attempting to get back to me.

We had the same thing happen a few weeks ago during an agility training session. Out of nowhere earlier that morning I had been hit by vertigo. I had taken my medicatiom to attempt to stop it in its tracks but my head was still spinning. I was having to be careful how quickly I turned my head. Dembe again was really unsettled, every time he was off the leash he was back at my side. One of the fellow spectators commented on it and I just said “It is because he knows I am not feeling well, he gets very protective of me if he senses something isn’t right.” I then went onto explain something that had happened just a week or so earlier.

To the uniformed observer this way look like a cute photo of me and Dembe having a cuddle. Although it was cute and comforting it couldn’t have been any further from the truth. I had been feeling not quite right all day. Jay had just gone back to work after coming home for lunch when I had the strongest feeling that I was going to pass out ( even though I was sat down, you see I can pass out in any position it is my super power). Initially I tried to fight it by clenching my buttocks and calf muscles in the hope that this would get the blood circulating. However when I started yawning ( this is a key indicator that my blood pressure is dropping rapidly) I knew I was going to have to get myself to the floor as quickly as possible and then get my legs raised. Dembe was asleep beside me on the sofa.

I quickly got myself down on the floor and got my feet up on the coffee table. I expected Dembe to sleep through this. Instead he got up and then curled up beside my head resting his face against my face. Normally when I lie on the floor this signifies play time. I was fully expecting to be licked, trampled on and toys dropped on me as he would think this would be part of the game. However he didn’t move he just snuggled beside me, I took the photos after I had been down on the floor for ten minutes as I couldn’t believe that he was doing this. I tried to get up but he wouldn’t let me, he had me pinned to the floor for a good 30 minutes. If his face wasn’t against my face he was lying on my arm making it almost impossible for me to move.

What I find incredible is this is not something I have ever taught him to do, this is something he has done on his own. He was also just 14 months old when he did this, he is now 15 months old.

I still find it hard to believe that he is so in tune with me that for whatever reason he knew that I was very unwell at that time and needed him to look after me. Feeling that ill, whilst alone is scary. Thankfully I had my mobile phone on me as the top I was wearing has  what I call a kangaroo pouch pocket. I always try to wear clothes with pockets so that I always have my phone. I managed to get in touch with Mr Myasthenia Kid and explain what had happened I got really tearful when I explained what a wonder Dembe had been. He asked if I wanted him to come home but I said until I knew if I could sit up or not unaided there wasn’t any point. Around 30 minutes after I first hit the deck I was able to sit up, resting my back against the dresser. Another ten minutes later and I made my way up to bed and spent a few hours lying down . Again Dembe behaved beautifully, he just came up to bed with me and slept beside me.

Which if you had ever met Dembe you would know what a normal active, annoying pup he can be. Who regularly crawls onto my lap and knocks the chromebook from my hands because it has been at least 15 seconds since I gave him a cuddle. Who throws his crocodile toy, well any toy of his choosing that day around the lounge and to hell with the consequences. So to adapt his behaviour on his own accord is really quite amazing to me.

This is what I am battling against at the moment trying to write the blog post

 He is not a quiet pup, he isn’t massively high energy but if he wants your attention he has ways and means of ensuring he gets it. Who could resist that face peering around the computer screen.

I thank my lucky stars everyday that we were lucky enough to have Dembe choose us to be his human parents.

I do feel like I need to point out that just because of Dembe’s unique ability doesn’t mean I love our previous dogs Travis, Mollie, Willow and Frankie any differently. Life will always be marked in sections before the Weims, after the Weims. Life goes on but it goes on around a huge Weimaraner shaped hole. And it always will. Dembe is not a replacement but our boy and the beginning of a new chapter. He is currently our best dog, same as Frankie, Travis, Mollie and Willow were when they were with us.

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/

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.