The C word

Well to be perfectly honest there isn’t an awful lot to talk about other than the C word which I really didn’t want to talk about for the third week on the bounce. But as things have changed dramatically here in the UK – we are now on a half arsed lock down ( I say half arsed because so many people are completely ignoring it). And now hubby will be home with me for the next 12 weeks.

Thankfully hubby isn’t in the 1.5 million that the NHS have put into the the very high risk group who have been asked not to leave their homes in the next 12 weeks. He is though in the next group down which is high risk. Basically this means he is at high risk of serious complications or death should he contract Covid -19. I found this out purely by accident on Monday when discussing it with a friend and fellow moderator on Facebook when she posted a link to the Asthma UK website that had detailed information on what Asthma inhaler mean you are considered to be on immunosuppression medication. My blood ran cold as I saw on the list Symbicort the brand my husband uses daily. I dug a little deeper and calmed a little when I read the dosage required and thankfully he is nowhere near that dosage. It then lead me to then google for information regarding methotrexate as that was increased in August to 20mg. The last dose before he would have been put on injections to control his psoriasis. 

Now if I am honest I am a little cross that gp surgeries aren’t checking to see what patients come under the high risk category. The very high risk group were sent a text or may still be waiting for a letter that should be with them by the 29th March. These are the people who will have the worst outcome should they contract Covid-19. People like Jays mum, who has multiple myeloma , a type of blood cancer. Thankfully Jays parents have taken the sensible precaution of self isolating for the last month. My parents are also self isolating, my dad will be 70 this year, my mum is in remission from ovarian cancer. People are having to search for the information themselves – and not all conditions are listed on it leading to a lot of confusion. Plus many people, my husband included just didn’t see himself as vulnerable. His asthma is well controlled, he has been on methotrexate for 6 years without issue. He rarely takes time off sick from work, he gets the odd cold but isn’t a sick person. So to now discover he was deemed high risk was a shock. A shock that he is struggling to process.

 I know that now everyone has now been told to stay in doors but for almost two weeks hubby was exposed to massive amounts of people who may or may not have been spreading this virus. It took me googling it on Monday and coming across this official NHS document to see that due to his dose of methotrexate and the co-morbidity of Asthma he was now considered high risk. The irony is he was sending all the high risk staff home from his work place last week, on full pay for 12 weeks ( 2 weeks have to be taken as holiday). The high risk group also included anyone with a BMI of 40 or over.  I am cross because he could have been home and not putting himself at risk. I am also cross with him because despite showing him the document, printing it off for him and explaining it to him, he didn’t believe me. He tried to get information from the doctors surgery, he was unaware that the doctors surgery is effectively closed and you can no longer just walk in off the street. He doesn’t really do social media, doesn’t read the news papers and kept turning off the news, so he was blissfully unaware of what was going on outside his work bubble. Laughably he also tried ringing 111 for information and was given short shrift by the call handler who basically told him don’t ring this number unless you have symptoms of Covid-19. 

So now I know for sure that he doesn’t pay much attention to me when I am speaking to him as I had talked him through all of this. He seemed to think it was happening elsewhere to other people and I am guessing that is the same reaction for a lot of other people because the lock down is laughable. The roads up to the common have been busier than ever and a lot of people without dogs, with small children even babies are up there. Now I know we are allowed out to exercise but honestly if I had a new born baby I wouldn’t be leaving the house and risking it’s health. We are only going out to walk Dembe ( I sit in the car) because he won’t poo or wee in the garden. We try to go when normally it would be quiet, as we have every day since 2004. It is like a bloody bank holiday up there. On our way to the common we saw families out on their bikes cycling together, again no dog. I am really struggling to wonder why if you had no reason to leave your home you would?

It took Boris’s speech on TV on Monday night, when he called for the lock down for Jay to realise that this was serious. After Boris had stopped talking he turned to me and said,” I’ve told XXXX ( his boss, who is lovely), that’s me home for 12 weeks. I love my work but I am not dying for it.” I burst into tears as I had been at my wits end with him. I couldn’t get him to see how dangerous this was especially with him being asthmatic. The relief was unreal. 

However in true Mr Myasthenia Kid style the following morning he had a series of melt downs. Which  I was expecting to be honest as the longer we are together the more glaringly obvious it is becoming that he is very likely on the Autistic Spectrum. He becomes irrationally angry when confronted with change. He doesn’t deviate from journey routes, dog walks, places we go etc. Literally even a suggestion of change will get my head ripped off. I learned a long time ago that unless it was life and death not to bother. He also has to have things broken down in to the minutest detail. I remember years ago when our first dog Travis was ill and in the vets, he badgered me constantly about what they were doing. I tried to give him answers but he kept on and on. In the end I lost my temper and screamed how the fuck would I know I am not a bloody vet. His anxiety was off the scale and when he feels like things have deviated from his routine his default setting is anxiety.

So despite knowing that he would be paid for his absence, he still insisted on messaging HR and having the same conversation with with them, that he had with his boss the night before. Despite also knowing the policy having sent home staff the week before. He was in a right state until he had the text from HR confirming he wouldn’t lose any pay. He was in such a state I told him that we would put together a schedule for him so that he would have a routine and a plan for each day. Because without this I know he will fall into a depression. I really struggled to deal with it yesterday as Tuesday is pretty much, 99% of the time his day off. So the fact he wasn’t working yesterday shouldn’t have been an issue. However it was the anxiety around not working that was causing the melt down.  

It is really hard work having to stay one step ahead of him and basically have to guess what the issues are because he doesn’t verbalise it. He has told me he is taking this 12 week period a day at a time rather than thinking about it as 12 weeks or even telling himself it will be June before he is back at work, is causing him to be anxious. It is such an enormous change in his life that it is sending him into melt down mode.  He is also feeling the guilt that he isn’t working alongside his team, who are working in the germ soup that is a supermarket. He knows rationally that staying at work is risking his life but he feels guilty that others ( although they aren’t high risk or if they are high risk have declined due to being able to work in an office) will be in that situation day in day out, to keep the country supplied with food. 

So his plans are to do some decorating, refurbishing some furniture with Tuesday’s and Sundays as his days off as they would always be in a normal week because we need to keep things as normal as possible.

I am feeling a lot less anxious now that I know that he isn’t being exposed to god knows what. However the stress  levels had obviously been building up over time with me and last night I came down with a migraine. Initially I had hoped I would sleep it off but at 2.15am I was woken with severe pain in the right side of my head and face. I took all my meds and then managed to get back to sleep only stirring at 4.45am when Jay got up and managing to mumble hot water bottle. I managed to stay in bed until 6.30am and then had to get up as my back was killing me. Thankfully by the time I got up the pain had reduced to that of just a bad headache and I knew by then distraction would be better than any pain killer I could take so continued with my day as usual. In the middle of the night I was cursing myself for not getting my blog post written up but thankfully even with helping ( more like supervising) Jay get the table sanded and waxed today I have still managed to get a blog post out.

I hope everyone is keeping well and safe. One day we may even look back on this and laugh, if we are lucky enough to get through it.

Take care

Dembe decided barking at the sander was the way to go! He also tried to get it to do zoomies with him, strange beast.

Sanded and waxed – the biro and lipstick marks removed and it is looking fantastic again

Hell in a Hand Basket

I really hoped that last weeks post would be the only one that I would write on Covid-19 but as the world seems to have gone to hell in a hand basket and we aren’t even in the worst of it yet, simply put it is a subject we just can’t get away from because it is impacting almost every aspect of my life currently.

However I can’t help but feel slightly irked at the melodramatics shown by people whom are healthy in every way and have in all likely-hood a very good chance of getting out of this alive that are walking around moaning like they are a doctor or nurse on the front line or have been exposed to Covid-19. I am so glad in some respects that my inner circle has got so much smaller because I would have probably been arrested for assault after slapping them around the face and telling them to pull themselves the fuck together. They are so inward looking only worried about themselves that they really don’t see they are at far greater risk of being strangled by their colleagues than catching it currently. This is really for the want of a better saying sorting out the men from the boys.

Amongst the chronically sick groups I belong to we are having a chuckle at you healthy individuals losing your shit over having to stay at home for 2 weeks ( if someone in your house is showing symptoms) or 12 weeks for the over 70’s / high risk groups. We have our own memes asking if you have tried yoga or kale to get better. It is hilarious that after such a long time ( for me I have been pretty much self isolating for 12 years) the tables have been turned and some of you will have a chance to see what it is like being separated from the rest of society through no fault of your own other than to get sick or be in a household with someone who is sick. Let me be clear no one from the chronically sick world wants you or anyone else to get Covid-19, we wouldn’t wish that or any other illness on our worst enemies. We just want you to understand what our experience has been like for however many years we have lived it.

Many of us in the chronically sick / disabled world had no choice about our self isolation. Once we got sick and had to withdraw from normal everyday life our worlds shrank. Initially there may have been offers of help and support. Friends ( if you were lucky ) may have visited from time to time but as the years ticked by and they got bored, our worlds shrank even more. I know I found that I literally had to keep the conversations going, be the one to constantly keep in contact with them, otherwise I heard nothing at all from them. Over time that has dwindled away which was why I was so keen to start my crafting group The Stitchin’ Bitches – more on that in a bit.

Whilst I am heartened to see whole communities rallying behind those who are too frail to go shopping or are having to isolate due to having suspected Covid-19. I can’t help but feel a little bitter that it was a crisis like this that was needed for some people to get the help they needed everyday not just now. I also wonder if this goes on for a long time 6 months plus if compassion fatigue will set in. Will people still be looking out for each other when this has blown over ( at the moment that feels a very long way off). I do fear t that once things get back to normal those of your forced into isolation will forget the experience and be no kinder to the chronically sick community than you were before all of this.

My crafting group The Stitchin’ Bitches of which we had 3 wonderful meetings that was thoroughly enjoyed by everyone has been postponed until it is safe for us all to meet up again. One member has COPD, one is immune suppressed, another has asthma ( badly), the other has a husband on fairly strong immunosuppressants. We are a really healthy bunch LOL. Out of all of them I considered myself the least vulnerable until the announcement on Monday evening and as I have the flu jab I am now considered vulnerable. I am not sure why I get the flu jab for free, it could be due to the oxygen that I use on an adhoc basis or the fact I have PoTs / EDS. My husband gets his due to asthma and with him on methotrexate I actually consider him higher risk than myself. So for now all non essential visits to my house have been suspended as I try to limit my exposure to the outside world as much as possible.

Due to simple economic’s hubby can’t self isolate for 12 weeks ( the current advice) we don’t have a mortgage and bill fairy that will come and bail us out. There are hundreds of thousands like us unable to follow the advice because of inadequate financial support if we do. Sure he could take a 3 month career break from work but it would be unpaid. So again do we chose to self isolate or to eat. It’s a very real question facing many of us in a country whose leadership have chosen ideology and economy over human lives. Now if he gets ill or shows symptoms of this virus we will both isolate ourselves for the required 2 weeks. He will get paid for that as his company ( and very well done to them for doing that) are paying people who are having to self isolate for the two week period. But to actually stop working until this blows over is a privilege that only the richest in society can afford. I did have a laugh at Virgin asking its staff to take 8 weeks unpaid off work. What out of touch moron thinks that their staff can afford to do that?

It is really hard not to get anxious about the whole situation, especially when my husband who is normally so detached from the real world it gets irritating, is starting to panic. At the end of last week after the blog post was published lots of people reached out to ensure I was ok. To be fair on the Thursday I was, on the Friday I was a mess. Thankfully I was well enough to do some fabric preparation for projects that I want to start and as that was all measuring and cutting out, I couldn’t let my mind wander and go down the rabbit hole. I swing from being utterly terrified to what will be will be, at an alarming rate. Things seemed to have settled down a bit, we aren’t watching the news constantly and we are practising increased hygiene routines at home.

There isn’t a surface in the house that hasn’t been sprayed with Zoflora at least twice a day! Including Tv remotes, phones and Chromebooks. In fact as soon as the spray bottle comes out Dembe runs upstairs. I am pretty sure he thinks he is going to get sprayed!

We have jointly decided after this dog training course ends ( only one session after tonight’s session ) we will be taking a break. We will be cutting out all non essential travel and socialising. It just isn’t worth the risk and although the training session is hardly crowded, it takes place in a huge barn, its just mixing with more people. People that maybe super spreaders or have symptoms but drag themselves there. I have already seen someone that was supposed to be isolating themselves for 7 days ( before the change to 14 days ) posting photos on social media with them out and about. With people still not taking it seriously, we aren’t prepared to put ourselves at risk due to their stupidity. I am sad about not continuing with the dog training for the time being as some weeks dog training is the only time I see other people other than Jay. Although we don’t stand around and chat just being with other people has done wonders for my mental health so the next few months are going to be tough, when I have got used to seeing people again. But I coped for the 12 years previously and will cope again.

Now when hubby rings me from work on his tea breaks he automatically asks how I am and then I do the same for him. His response this morning was ” well I am ok for the moment, but there are more people now absent from work self isolating”. In a store where they have been cheek by jowl with panic buyers in there thousands for well over a week now is it any wonder that the staff have been exposed. Obviously none of the cases are confirmed as people are only being tested if they are hospitalised, thankfully no one yet out of the staff has been seriously ill enough to be hospitalised. But it everyone is in limbo not knowing if they have had it or if it was just one of the many bugs doing the rounds at the moment due to the lack of testing taking place.

We have at the moment no idea what the future holds. We live in interesting times. 

I sincerely doubt that this will be the last time I blog about the subject.

Who knew you would be considered rich if you have more than 4 toilet rolls? – a little light relief.

***

I keep meaning to say that hubby had the dentist back at the end of February and his Dentist complained to him then that they were struggling at the practice to get face masks and other protective equipment. That was around February 28th, I am writing this on 17th March and things have only got worse since then. If the dentists are finding hard imagine what it is like for hospitals. Many doctors are coming out and saying they can’t get the proper equipment to ensure that they don’t get exposed whilst treating patients. As I said earlier hell in a hand basket and this thing has only just started.

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.

Raynaulds Phenomenon / Syndrome / Disease

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

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

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

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

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

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

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

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

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

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

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

For more information on Raynaulds Disease

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

Reflections

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

DRI’s

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

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

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

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

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

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

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

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