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/

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.

 

To feel human again

It has been a manic few days and it has left me utterly exhausted. I have seen that many people I could almost be accused of being a social butterfly. All I know is today I feel like the batteries have been taken out and I am working with my emergency power supplies only.

We have started back at dog training and we are going twice a week. On Sundays Dembe has his agility training which he loves and is doing so well at. On Tuesdays he has his obedience training which he loves in a different way. Both tire him out mentally as well as physically. The problem with the dog training is that there is just one day in between which doesn’t quite give me enough time to bounce back if I am then adding in medical appointments or getting my hair done or seeing people. 

Tuesday was my final medical appointment out of a string of 4 over the last 3 weeks. One medical appointment in a week is enough to knock me for 6. 4 in the space of three weeks has sent me crashing. It’s hard to describe what you mean to people that aren’t sick. For me it means I wake up feeling more tired than when I went to bed. It is an effort at times to even take a breathe in. As the day wears on I feel like I have been at the gin, without the fun part, so my eyes are bouncing around all over the place and I feel disconnected from my body. I look very pale and run down but inside I feel like death warmed up. I can struggle to maintain my body temperature so that I am freezing cold ( even in the height of summer). I can get emotional over the slightest thing, lose my temper usually with inanimate objects that aren’t doing as they are told because my hands won’t work ( so I am continually dropping them ) . It makes it hard for me to complete anything that requires attention to detail.

Add in me making the stupid decision to make all the Christmas gifts for family & friends but not starting the majority of them until a few weeks ago and I feel like I am on a hamster wheel that I just cant get off. There is no down time as not doing something for a day puts me further behind but this week I have had to take a step back because I am so tired I can’t work without making mistakes. Doing nothing makes me feel like a failure and that I don’t contribute anything to the world…which is why I have been teaching myself how to crochet so that on the days I can’t sit at the sewing machine / embroidery machine I can do something else curled up on the sofa or in bed.

The stupid thing is I keep adding to this list of things to make which is then piling on the stress. I will get there but I keep having panic attacks when I see someone helpfully posting on Facebook that there are X amount of days / weeks until Christmas. I really need to learn to be kinder to myself as even on the days when I have felt drained I have still pushed myself to do just a little something. I like to break tasks down so that I when I come to make an item it is all ready to go and the amount of time it will take to get it all together will be massively reduced. 

So like yesterday I decided to have a go at making the Doggie Christmas Stocking from Sweetpea Embroidery. Because I know I need to make at least two of these for gifts, as I prepped the fabric pieces for the first stocking I did the second. It took me longer, obviously but Jay was home and was doing all the running around for me so all I had to do was sew. When or if I manage to get to the embroidery machine today all I will need to do is stitch it out as everything is ready and cut to size. This is how I have to do all my projects, I do all the prepping one day or over a couple of days and then when I make the item I can concentrate solely on that rather than expend energy I don’t have. It is very rare for me to be able to start and finish a project no matter how small in a day. As my actual time I am able to work is so severely limited. I can’t sit at the embroidery machine or sewing machine all day, I am deeply envious of those who can. I am in pain within 20 minutes, so have to take regular breaks. I have an alarm on my phone that goes off every 20 minutes to ensure that I get up and move / change positions. Otherwise it will cost me £45 at the physiotherapist whilst she tortures me ( in the nicest possible way ) to correct the damage I have done to myself. 

It’s the same for material prepping. Everything is done in stages. Many times I make cardboard templates to help me with ensuring I cut out the right size fabric pieces. This helps with cutting down waste and ensures that even if I am not thinking straight as long as I have the right template ( sometimes that isn’t as easy as it sounds) I can be trusted to cut my fabric out. Obviously making templates adds more time to a project, it tends to only happen if I know I will be making more than one of an item. Basically the majority of my life is spent breaking down tasks into smaller manageable chunks so that I have the energy to be creative and give my life some meaning.

Currently there are boxes everywhere with bits of fabric / templates / batting all cut to the correct sizes waiting to be embroidered and sewn together. It will all get done but it will be done slowly and in the best way that I can pace myself.

I am so exhausted today as Sunday I had two visits from friends who had come to collect their table runners that I had made them, one in the morning, one in the afternoon. It was great to see them but we also had dog training in the middle of the day.

The table runners had taken a lot out of me getting made and I had been stressed out about getting them straight and sewn together nicely. I took a lot of time over it. The top stitching alone left me needing a nap afterwards last Friday. I sewed the rest of it together on Saturday afternoon.

Monday I had my hair done for the first time since August, it needed done desperately as I had already used my dressmaking shears to hack a sizeable amount off the fringe ( bangs ). After my attempt at hairdressing it was even more important that it was sorted out. I am lucky that I have a wonderful friend who does my hair for me and knows I find the whole process exhausting. Doing it at home means it takes 2.5 hours instead of 4 hours being overstimulated by lights and sound in a hair salon. 4 hours in a salon would probably lead me to be bed bound for around a day.

Tuesday – the last medical appointment was for my filling. I did it without diazepam the first appointment in ages where I have managed that. My dentist and I have now got a process that works and reduces my anxiety. I had to ask him just to not tell me any detail about the procedure. I only need to know that I require a filling not what he will be doing. It worked brilliantly as he didnt tell me on the 4th of November what the process would be and yesterday as he did it he kept quiet . It worked like a charm. I was just left with TMJ pain in the afternoon and evening, which triggered a migraine. I spent a lot of the dog training session last night losing the vision in my right eye and the feeling that my scalp was shrinking.

Today ( Wednesday ) I have woken up with the remains of a migraine, waves of nausea and just generally feeling washed out and knackered. I will push myself later to get something on the Christmas present to do list made or completed but for the minute I am drinking bucket loads of coffee in the hope it will make me feel more human again.

Update on Dembe

For this week’s blog post I thought I would give you an update on Dembe. For those of you who would like to see more of him, he has his own blog over at http://www.thedembediaries.com, where I publish what we have been up to over the previous week, with video’s and photographs.

Dembe was 10 months old on Monday (16th SEptember 2019). He now weighs 32kg and is 23 inches to the shoulder. I can’t sing his praises loudly enough, he is a simply adorable pup. He is so loving, sensitive, clever and just happy. I have never known such a happy dog whose tail only really stops wagging when he is asleep but he has also been known to wag it in his sleep as well.

We are training him to become my assistance dog, so we have been doing lots of training going into various different environments, so that he can cope with strange noises, people, smells etc. He becomes a different dog when his yellow vest goes . He knows he is there to work and is on his best behaviour. Like anyone though he has his good and bad days . His bad days though most people wouldn’t even notice, Jay and I are acutely aware.

We passed level one basic obedience training and handling back in July and we are now attending level 2/3 with him for the next few weeks. We all enjoy going to the class and being able to ask the trainer questions and for advice. Dembe loves seeing the other dogs and his time spent with Jay is creating a fantastic bond between them.  When I look back at how he was at the first training class in June to how he is now the transformation is magnificent. We have a dog that listens to instructions and walks beautifully to heel. In fact on a few occasions Jay has been asked by complete strangers for hints and tips on training. Which always makes us laugh.

He is a really sensitive soul, he hates thinking he has done anything wrong. If he accidently hurts me ( which all puppies do clonking you with their paws etc)  he panics and smothers me in kisses. He is such a very loving boy who likes to be touching you when he sleeps or sits next to you. He is a mummys boy but it is wonderful to see how excited he gets when Jay comes home or Jay goes to give him a cuddle.

He is very clever, it took me a matter of minutes to train him to remove my socks. He can retrieve various toys from his toy-box when you ask him to. If you say “where’s crocodile?” “find him” he runs to the toy box and will retrieve his favourite crocodile toy. He will do this with a few toys like piggy, doggy, baby bear, baby blankey and blue dinosaur. I have also had him retrieve his empty kong from upstairs. We were talking about this at dog training last night and apparently this shows he has an aptitude for searching or being a search dog. This isn’t something we have trained him to do. One day I asked him to get crocodile and he did it. I thought it was just a fluke so I asked him to do it again later and he did. I then waited for Jay to get home and showed him. The next day I asked him to find Piggy wig and he did. Now it is our party piece when we have visitors!

As he is 10 months old there are things we still need to work on, things that we have let slide that are now becoming an issue. He is very keen to be as close as possible when you are eating. Which is a bit of a nightmare on the rare occasions we have guests. We need to stop the sitting next to you attempting to get your head in your plate nonsense that is happening . The other thing that needs working on is his need to jump up at me when I am on my mobility scooter and I have come to a stop. However that needs Jay to keep him on a shorter lead and to stop him getting the ability to jump. That will be a huge challenge as he never will see that he influences or has control over what Dembe is doing. Despite doing all these hours of training so it can be a bit annoying at times when you are having the same conversation over and over again. 

One thing I am very sure of is I want a dog and not a robot. I love his character and I don’t want him to feel like he can’t be himself. 

It was very funny on Sunday as we were taking a trip around a supermarket. This one was laid out differently and had a huge precut cheese section at the end of the deli counter. There is nothing in the world that Dembe enjoys more than cheese. He will literally spin in circles if you get the cheese out of the fridge. So here he was confronted by his most favourite thing in the world at Dembe height and easy to access. I closed my eyes fearing we were going to have to pay for a huge block of cheese because he had sunk his teeth into them. He sniffed for ages, every piece of cheese got a sniff but he was very restrained and when Jay told him leave he did indeed leave it. That was a massive test in self control for him and I was so proud. 

But even prouder when my friend who was the duty manager told me the story about the guide dog that visited their store. When you think of Guide dogs for the blind you think of superbly trained dogs that would never be tempted by food whilst working. They are the dogs that are so well trained they put many other dogs to shame.

At the side of the fish counter in her store they have a freshly cooked pasty section. At dog height…how perfect. Beccy told us that as the owner of the guide dog was talking to the fishmonger, the guide dog took a sly lick of a pasty  at the front of the shelf. Then stared down the fishmonger who had watched him do it, in almost a dare to see if he would tell the owner. The fishmonger said the attitude from the guide dog was hilarious and he did indeed keep quiet! That really made us laugh and made him obsessively sniffing the cheese not such a big deal, I mean if guide dogs get a bad day!

Dembe makes us laugh on a daily basis. I didn’t know it was possible to love a dog as much as I love him. He likes walking around carrying stuff in his mouth and he walks around with his antler chew like pipe. When we first brought him home it was really hard, we were dealing with so many conflicting emotions initially it felt like I was just going through the motions. I didn’t feel that bond with him like I do now. I was constantly reminded that I didn’t know him like I knew Mollie, Frankie and Willow because I had known them years. It fueled my anxiety because I was constantly worrying that if there was something wrong with him I wouldn’t know or I would miss the subtle signs that I wouldn’t have done with them. Now however I feel like I know him more and we do have a wonderful bond. I know I love hima crazy amount whereas before I was always doubting myself that I did.

At times I wondered if we had done the right thing by getting him so soon after Frankie and Mollie passed away. But I credit him with getting Jay and I through that awful dark time. We wouldn’t be without him and he brings such joy to us both.

Everyone who meets him, falls in love with him and his gentle nature. In all the time we have had him I have never heard him growl. Bark yes, he likes to do that a lot. Which makes me laugh as everything I have read about Labradors says they seldom bark. Obviously Dembe didn’t get that memo! 

He is also very good when I am poorly and he adjust his energy level accordingly. He did it when I was poorly with a chest and sinus infection about three weeks after we brought him home. He would sleep all day on my feet and only run around like a maniac when Jay came home for lunch and at the end of the day. If I am feeling crappy he will sleep beside me on the sofa having a cuddle. If I am feeling brighter he will want to play more and have more engagement with me. Again this isn’t something we have taught but this is something he has done instinctively, just like his Uncle Frankie.

I could go on and on about Dembe the wonder dog but I won’t bore your further with this quick update.

Truth v Gossip

There is one thing that I have found since having several chronic health conditions that people simply do not understand and that is the fatigue levels that come with them. I know some people have created this fairy tale in their heads that either have withdrawn from society or that Mr Myasthenia Kid doesn’t let me out in the world. People stupidly believe this gossip rather than actually ask me. They are simply untrue, the reason I don’t go out very much is because I get so exhausted by doing very little outside the home.

At home I have an environment I can control. I have regular household sounds, lighting etc. All of which my body is used to. The minute any of that becomes too much I can go to bed, lie down, limit the light and sound. Out of the home I have zero control over the additional stimuli my body is bombarded with. Also these days I am using a scooter a lot of the time, the concentration levels involved in driving this even for a short period of 20 minutes, drains me. It makes it hard for me to manage a conversation and drive. The minute I don’t concentrate like when driving a car accidents can happen. I have almost gone off the sea wall down at the seafront because I was trying to talk and drive. It takes a lot out of me and unless you have to balance your activity and rest periods people just don’t understand it.

Since Sunday I have had an extraordinarily busy week, for me. For normal people this will probably sound like a leisurely few days. On Sunday we went to Pets at Home the big one so around 20 minutes in the car to get there. Then we went to Tesco to upgrade our phones which took about an hour. We had Dembe with us who behaved beautifully. There were lots of people in Tesco that I knew that haven’t seen me since I have lost 49lbs in weight and who also wanted to meet Dembe. So it was very busy. After the morning we had around 90 minutes sit down and then we went to visit friends with Dembe. It was lovely to see them both and Dembe really enjoyed his visit too. However by 6pm I was completely drained and was up in bed resting, before dropping off just after 8pm.

Many of you will be thinking how can that low level of activity wear you out? I wish I knew, my only explanation is the assault on all my senses just physically and mentally wears me out. The extra noise, people, lights, smells, physical activity of driving a mobility scooter. Being upright with my legs down and blood pooling, changes in temperature, all those things combined just zap any charge that was left in my batteries. On Monday it took me hours to get moving. I was fit for nothing until about 2pm, which is crazy. My body just felt like there were 15lb weights attached to each limb and my head, well I just couldn’t really focus on anything that demanded more than a limited amount of mental acuity. 

On Tuesday I felt a lot better as I had spend Monday recuperating, which again if you have never suffered from bone crushing levels of fatigue you would struggle to understand. We needed to take Dembe to the vets to be weighed and to get his worming tablets / flea / tick treatment. We were there around 20 minutes as we like to have a catch up with the staff as Dembe is very popular there. We then popped up to Tesco for a few items, we took Dembe with us to give him some more environmentalization training. We only needed three things but Dembe has such a huge fan club amongst the staff and customers that it took 40 minutes. I then spent as much of the afternoon as I could resting with my feet up as in the evening we had our first night back at our weekly dog training class.

Evenings are the absolute worst time for me to be out of the house. Purely because I go to bed every evening between 7pm – 8pm or earlier if it is a rubbish day. By then I struggle to hold myself upright, co-ordinate my movements and as I discovered last night I can also end up struggling to talk because my brain can’t channel the words to my mouth. Ending up with me looking like a fish out of water. I thought I would be ok, after all I did the dog training in the summer. But I don’t think I had been out as much during the day. The dog training lessons are intense. Even though I just sit there and let Jay do all the training. I can’t do the walking around or being up on my feet that much. 

I coped ok in June and July so it was really surprising ( and frustrating ) to me last night to get half an hour in and to start feeling really, really unwell. I don’t know about anyone else but I hate having to ask for help or potentially making a scene due to being ill. I have in the past been known to wait for everyone to leave the room before I have allowed myself to projectile vomit. Thankfully there was nothing for anyone to see, although I may have gone more pale than normal. I just suddenly had the internal organ sinking feeling, then felt I experienced some feelings of dissociation. I knew I was in the room but I didn’t feel I was part of it. Unless you have felt this it is a difficult feeling to explain. I can feel like this just before I faint and I knew that is what my body was preparing to do. As I was sat down I rapidly starting clenching my bum cheek and tensing my calves in an attempt to get the blood moving. The whole time I was absolutely terrified I was going to wake up surrounded by people having taken a nosedive from the chair.

The weird thing was I could see poor Dembe trying to alert Jay to what was happening as hit lay down on the floor and had his head turned to me. He was watching ensuring I was ok. When I spoke to Jay afterwards to let him know what had happened he said “why didn’t you get up and go to the car so you could lie down?” which is a reasonable enough question as normally I do have quite a bit of warning so I can avert a faint. I just said to him that I felt so bad I was terrified if I stood up that I would go down with a bang. He then said “well why didn’t you shout me?” the simple fact of the matter was I just didn’t want to do anything that would draw attention to me.

 I really HATE the spotlight being on me, I hate it even more if it is because I am having a funny turn or have fainted. It is stupid I know but I just can’t, it makes me feel so very uncomfortable. Like I am causing a nuisance or being melodramatic. This probably goes back to various incidents at school and at work where I have been seriously unwell and been called a drama queen or that I was causing a scene. When I was younger I was never believed when I was sick, even when I have had major surgery, I had work colleagues say I was doing it for attention. How on earth you get a team of NHS surgeons to open you up from pubic bone to sternum just for fun I have no idea but apparently I can.

Thankfully my funny turn went after 10 minutes but it left me feeling seriously drained. I spent the entire journey home yawning non stop which is always a sign that my blood pressure has dropped. I was in bed by 8pm and asleep by 9pm.

Today ( Wednesday ) I am seriously pooped but like I always say I’d rather be knackered due to going out and having fun or just living a normal life than being this wiped out from doing nothing. Again it has taken me all morning to get going. I have been up since 7am and it is only now at 13.30 that I am starting to feel human and that I can do anything that needs any mental clarity. On days like this I have to take advantage of any window of opportunity when I feel well enough physically and mentally to be able to get up and crack on with something I want to do.

Obviously having the Weimaraners did curtail my activities outside the house. It was too expensive to get dog sitters in all the time and there are only so many times you can ask friends to do it for you. They were too destructive to leave by themselves, so in the end it just became easier to not go out or just one of us go, than stress out about finding someone to stay with them. Our friends have been fabulous, Imogen looked after them so much in 2015 when I had my CSF leak. If it hadn’t been for her I wouldn’t have been able to attend half the appointments I did. She also looked after them when we went to the Emma Bridgewater factory for the day which was a 14 hour (plus) stint . My friend Sharon also did us a massive favour when she stayed with them so that Jay could appear on Sewing Quarter TV. Both Ellie and Heather have stepped up too and looked after them, along with Tracey, Sarah and so many others over the years. But even with that massive pool of helpers it wasn’t fair to continually ask them to look after them. So our outside activities took a back seat, plus a lot of the time I just wasn’t well enough.

Now we have Dembe and we are training him to be my assistance dog it means the whole world has opened up to me again. It is really weird after having 12 years of not really going anywhere but the hospital, the doctors surgery or the dentist. Those visits also wiped me out. We are so used to being home we are having to force ourselves to go out. Which is another reason why we are doing all the training with Dembe as it means at least once a week I will leave the house and also that he will be a well behaved assistance dog whom we can take everywhere with us. But I will always have to pace my activities. I will never be well enough to go out all day, every day of the week. I just don’t have the stamina or physical reserves to be able to cope with that. And that is fine with me. I do quite like my own company and being able to do the things I want to do. I guess I am saying I like a balance.

So when someone tells you that someone is a recluse or that they aren’t allowed to go out. Have a good long think about that person’s circumstances. Think about if they have a chronic health condition, suffered a bereavement all manner of things that could be the cause of them not being outside in the world as much as you think they should. Don’t take the easy option and accept the gossip no matter how credible the source because it is just that their take on what they “think” is happening. Which doesn’t make it the truth.

Miserable ….you fill in the blanks

On Tuesday 16th July I went to my doctors appointment. As I can’t get to these things alone due to my mobility issues and no longer having a driving licence, Jay and Dembe ( who is training to be my assistance dog) came with me. I had the doctors appointment as I have a lump at the front of my neck near my adams apple. It can’t be seen by the naked eye but can be felt. When I move my neck and head in certain positions I can feel the lump pressing on my esophagus so it was important that this was checked out. 

We managed to rock up about three minutes late due to an unexpected road closure. We had hoped to prk up outside but instead had to use the carpak across the road. This all added extra minutes that we didn’t have as Jay had to assemble my mobility scooter, get a parking ticket and get Dembe’s lead on. We had put Dembe’s high viz yellow coat on before we left the house. It says on the side of it “Assistance Dog in Training” and when he is “working” we put his coat on him so that members of the public are aware of what he is doing.

We managed to get into the doctors a little stressed due to being late. The main waiting room was practically empty it was as I was getting checked in that I was told my doctors room was at the end of the corridor. This was a major ballache as this waiting room is literally the width of a small houses landing or hallway. You can’t swing a cat in there. When we got there it was jammed and there were only two seats left. Dembe was a little perturbed that so many people were so close to him. He is used to be given space. It’s not that he won’t behave, it is just this was our first visit to the surgery with him and we were playing sardines. The doctors surgery was also unbearingly hot. If I am complaining of the heat it is boiling to a normal person.

Poor Dembe was panting away, he wasn’t unsettled but he was fidgeting a bit to get comfortable. We had a massive amount of treats and just practiced calm giving to get him to settle which he did. Considering he is just 8 months old today and this was his first visit he did well. Especially with it being so busy. There was no barking or crying despite the loud noises coming from the floor above. He really does know that when his coat goes on his behaviour has to change and it is wonderful to see. Many people in the waiting room were complimenting him on being so good for an obviously young dog. So what happened when we went into the doctors consultation room has really angered me.

The doctor made it clear from her facial expression she wasn’t happy that I had both my husband and my assistance dog with me. Jay sat across the other side of the room and kept Dembe occupied. Doing various exercises silently so he was totally focused on Jay. He was sat right in front of Jay, well out of the way of the doctor. The only noise he was making was panting. The doctor needed to examine me on the couch as I made my way across she piped up “Your dog is very hyperactive”. Had I not been in a doctors surgery I would have probably given her a gob-full. Instead I pointed out that he was just 8 months old, he was in training and that panting was not the sign of a hyperactive dog but a hot dog. Jay decided to take Dembe out of the room and walk him around outside the building, he was really angry with the doctor and didn’t want to end up saying something that could impact my treatment. I was so angry that this doctor that obviously knows fuck all about dogs was making snide comments about him. A dog that had done absolutely nothing wrong. I didn’t bother to speak much at all after that because I knew if I started I may have ended up having to look for a new doctors surgery. 

It seems that kids can wreck the joint at the doctors surgery, run around screaming, grab at people etc – all stuff I have witnessed. But a dog that is simply panting is hyperactive. Honestly the stupid cow should have seen him the first night of puppy training 7 weeks ago when he was play bowing, barking and generally being a dick – that is hyperactive. I would say if Dembe had been naughty or hadn’t behaved as he should. I am not an idiot. The whole reason we are doing all these training courses is to ensure he conducts himself well when working / out in public. So for an uneducated, miserable cow of a doctor to say he was misbehaving by snidely saying that he was hyperactive is bang out of fucking order. It’s been 10 hours since the appointment and I am still fucking seething about it.

 I have seen some crap doctors in my time but she took the biscuit and it wasn’t just the issue with Dembe. I also told her about my dry eyes and the fact they are drying out at night causing abrasions on my cornea. She said she would prescribe me something for my eyes. I told her I needed something at night as that was when the damage is occurring. My eyes are very dry during the day as the Hyloforte drops are only providing about 20-30 minutes of relief at a time. But I need something at night to stop my eyeballs sticking to my eyelids. She has totally ignored that and prescribed me drops for day time use. I give up, what part of the conversation didn’t she get. She didn’t even think it might be important for me to see an ophthalmologist to get my eyes checked. To see of we could get to the bottom of why my eyes are dry and what could be done about it. She has taken it into her head that I am allergic to liquid paraffin when I have used it in another eye ointment perfectly fine. I was so pissed off by this point other than repeatedly bang my head against the desk I had to just smile and breathe rather than tell her what a giant fucking cockwomble she was. I do try not to lay into doctors, its a thankless job, so many targets and patients to see. But of you aren’t going to fucking listen and then make pronouncements on my dogs behaviour despite clearly being no expert then I am afraid you deserve everything this post has coming for you.

As I left the doctors I had to book in blood tests ( check my thyroid) and the doctor is doing a referral for an ultrasound to check out this lump which she believes is a lymph node. I can tell you something for sure I will never be making another appointment with her again. The receptionist was really lovely and said what a lovely dog Dembe was and how well behaved he was. She wouldn’t have known what had gone on in the room as I was literally at the desk seconds after the appointment was over. As I looked out of the surgerys door I could see an old chap fussing Dembe and Dembe sitting there loving it. No barking, no crying just a well behaved, panting dog. That made me even more angry.

Jay said the old guy was talking to him for a while and made a massive fuss of Dembe. Dembe was a little scared at first but Jay passed the guy one of Dembe’s treats and he was won over immediately. He said it was so sweet. Jay said the guy was obviously quite lonely but because of the love he was showering Dembe with Jay just let him and was chatting away with him. Jay said after about Dembe that maybe we should get  him trained as a Pets As Therapy dog as he loves having attention and has such a loving nature. It’s definitely something we will consider in the future once we have his training mastered.

After the doctors we walked over to the mini Marks & Spencer as I had a delivery to pick up. As we walked through the door all the staff were smiling at Dembe. It is lovely when we take him anywhere with us in his assistance dog vets, people who have looked as miserable as sin just moments before just beam at him. I love the way this dog makes people smile …apart from you know who..Miserable…….you fill in the blanks.

Dembe was really well behaved in M&S and on the walk back to the car. To reward him this afternoon we took him up on Woodbury common and I accompanied them on my mobility scooter. So I will end this angry blog post with some beautiful photos of my hot dog, not hyperactive one. Stick to diagnosing people love, as animals are just not your forte.

The last one is Dembe working, wearing his assistance vest.

Thanks for reading!

Dry Eyes

I got diagnosed with dry eyes over ten years ago, it could have been 15 years ago, I just know Travis ( our first Weimaraner) was alive then. How I found out I had dry eyes was due to the fact a cigarette end had blown into my eye whilst we were in the car. The agony it caused I will never forget. I had a burn to my cornea and thankfully no lasting damage but a few weeks later my eyes were feeling very sore so I took myself off to the eye infirmary where I had a few tests and found out my eyes were incredibly dry.

On and off for years they have been treated ( very poorly) with the first line treatment for mild cases of dry eyes hypomellose. That treatment in all the years I have been taking it does nothing, the liquid evaporates off my eyeball in a matter of seconds and I am back to the sore, itchy burning feeling I basically put up with 24/7. On the odd occasion when I have made a fuss I am given lacrilube to use at night, which is alike vaseline for your eyeballs. It is fabulous stuff but it means you can see fuck all for hours once it has been applied so has to be done when you are certain you are going to sleep.

I have brought up with numerous doctors that my dry eyes were getting worse, that I am waking up with crusty eyes that then burn and sting for the rest of the day. For some reason I just haven’t pushed this and have allowed myself to be fobbed off with the excuse that it is my medication causing my dry eyes as if this is in some way my fault. I am now coming off all medication that causes dry eyes – even though I have been put on these after the diagnosis of dry eyes was given.

On Sunday morning I woke up with with my eyelid stuck to my eyeball. That is as grim as that sounds. Only I didn’t twig what was going on until after I rubbed my left eye and it felt like the top surface of my eyeball had been removed. The pain caused my eye to water profusely. I also worked out that this has been happening for months to a much lesser extent, I keep waking up with a searing pain in my eyes, my eyeball has been sticking to my eyelid.

I realised quite early on, that I had an abrasion on my cornea but I just didn’t want to have to go to the local minor injuries unit with the high probability that they would send me onto the eye infirmary. I foolishly thought how bad could it possibly get ? I decided that I would ignore it in the hope that the pain settled because ignoring it has always worked so well in the past. We decided that we would take Dembe up to the local supermarket to give him some experience of dealing with a shop environment, noise and large volumes of people. He handled it like a pro and we were both so proud of him.

He is walking like a dream and has stopped jumping up at me when I am on my scooter. He now sits beside me and waits for me to give him a cuddle.

My eye pain was ok as long as I was 100% distracted, so I threw myself into binding a quilt I had made for Jamie aka Mr Myasthenia Kid. I wanted to get it finished and he wanted it finished and on his bed! I managed to get that done but as soon as I finished and no longer had anything to distract me the eye pain ramped up by about 500.

I actually waited until Monday to take this photo.

We decided we would start watching season 3 of Stranger Things. I sat with a hot compress on my eye because my logic was the heat would help it as they advise a hot compress with dry eyes. I was kidding myself still that the eye pain was dry eye and would settle. I lasted 20 minutes until I asked Jay to take me to the local hospital where they had a minor injuries unit. I knew (well I hoped they still had it ) that they had all the kit for an eye exam, I kept my fingers crossed that they wouldn’t insist on sending me to the hospital and the eye infirmary. As I knew the wait would be horrendous and sitting up like that for several hours would knock me for six.

Jay dropped me at the eye infirmary and he took Dembe out for a walk. I am extremely grateful that I was seen within 20 minutes of arriving. It wasn’t busy but there were other people coming in with more serious issues than I had. I was ushered in but immediately told that they would only do a basic eye exam and then send me to the main hospital as I had Ehlers Danlos syndrome. I questioned this as I knew it was just an abrasion and no need for the trek to the hospital ( one I hate due to a couple of twatish doctors based there). I was informed as the eye is made up 100% of collagen they couldn’t mess about. I was shocked that this nurse was so on the ball with EDS. Normally they are clueless, not their fault if they have never come across it I must add.

I made a few grumbling noises along the lines of its just an abrasion there is nothing wrong with the rest of my eye and that sitting for hours up there would make me much sicker in the long run. I had an eye test which I think I did reasonably well or well enough to convince her I wasn’t in danger of losing my sight imminently. So she acquiesced and did a proper eye exam. The local anesthetic stang like hell, it felt like I had a million paper cuts on the surface of my eye and she had poured vinegar on it. Once the stinging wore off it provided me with a lot of relief as the pain was dulled massively. She had a look at the structure of my eye which was all sound. She then added the lovely yellow stain that they put in and immediately could see I had a superficial abrasion right across the centre of my eye. I hadn’t been able to pinpoint where the pain was coming from my eye hurt and hurt more every time I had to blink. It made sense that it was right across my eye.

Me when I got back from the minor injuries unit. I was given antibiotic ointment, as my eyes were so dry it would provide some relief as it has to be put in 4 times a day. I was made to promise that if it wasn’t any better the following day I had to head to the main hospital and get it checked out. Thankfully it was an awful lot better the following day.

I have an appointment with my gp next week that I had booked for another reason – which I will still be bringing up! By the time I go to my appointment the local injuries unit would have informed them that I had an abrasion on my cornea caused by my eyeball sticking to my eyelid and that my dry eyes need to be treated! However as it is more than a week away I have spent £30 on dry eye ointment for night time to keep my eyes moist and to prevent them sticking to my eyelids again and some much stronger eye drops that should provide more relief than the tap water ( sarcasm but that might as well be what it is) I have been prescribed up until now and that someone saw fit to remove from my repeat prescription list. 

My eyes are still quite uncomfortably dry, I am awaiting my delivery of the day time drops as nothing I have here if I wish to be able to see at all will provide any relief. When people say they have dry eyes unless you have experienced it you would never realise how bloody painful it can be.