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.

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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.

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.

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.

Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.

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.

Drained

Well the clock has run down and I still have no clue what to write this blog post about. Last week I was full of energy but this week I feel like the batteries have been removed and I have been left discarded in the middle of the playroom. I have had two very restless nights on the bounce, a physio session yesterday and I am drained. It isn’t very often I feel this fatigued but I am even struggling to ignore the siren call of my bed presently.

I am wondering if it is a combination of being back on antibiotics again, courtesy of a HS flare up. A mild virus, I have a bit of a cough / sore throat but it really isn’t anything major, more of a mildly irritating tickle but feels like it did in the bad old days when it would go into Bronchitis. Of course being two years smoke free ( I gave up smoking on 6th August 2017 and haven’t touched them since) I had hoped I might avoid a chest infection, especially as I am now taking zinc daily. With the change of the season, the air is getting fresher so my joints have thrown a hissy fit. Every day this week I have spent sat on my heated throw attempting to combat my joint pain with heat rather pain medication. My fingers are really bloody painful (including my thumbs), costochondritis has flared up, my right hip is painful, piriformis syndrome is rearing its ugly head and I keep getting a spasm in the right-hand-side of my back. I feel like I should really just dip myself in a vat of Ultrasound gel and have done with it. Every night I am spending around an hour giving myself an ultrasound treatment on various parts of my body. That in itself is draining but lowering the pain levels. This probably sounds like a huge moan. It isn’t I am just stating the facts. I put on a good show but I am exhausted by it all.

It is deeply frustrating when my only desire is to be creative and I can’t motivate myself to do it or the pain won’t let me sit at my machines for longer than a few moments. I did manage to get a couple of bits done last week. For the first time I made patches out of my embroidery work and attached them to make up bags. I found the pattern on line but adapted it due to increasing the size by 10% and adding zip tabs to give it a better finish. 

I made these two for friends who are both going through an awful time. It is also part of me paying forward after receiving a massive parcel of fabric from a lovely lady called Beverley on Instagram. She has been supportive of my sewing and embroidery from day one – she sells stuff online and her work is amazing. She always is full of praise for my work, which makes me blush as I am so hyper critical. Both bags were made from the fabric she sent me, as will a couple more, that will be Christmas and birthday presents. 

I am itching to get started on working on these items but everything feels like lead. Maybe later on I will start to feel a bit better and I will be able to do some embroidery. I make the patches first, deciding on a design for each person, before then deciding on the fabric within my expanding stash that goes with it best. For the Lurcher bag I chose the blue leaf fabric because it went so nicely with the scarf on the dog. With the fox bag I chose the white and green as I felt it looked like sunlight through leaves and you were peering through the undergrowth and came across the fox. Sounds a bit whimsical but that is exactly how I work and I make no apologies for that. That’s why I get so fed up when I feel so drained that I just can’t work on a project. I know there is plenty of time but there are just so many things I want to do.

When I can’t sew or embroider I spend a lot of my time looking at projects for the future. My whole life revolves around sewing / quilting / embroidery and I love it. I have never felt so creatively fulfilled.  Which is why it is so frustrating when I can’t actively do stuff. I am lucky that I can do it, so I really don’t want this to sound like I am moaning. Although thinking about it I am fully entitled to. I can’t see many of my “well” friends coping with the amount of shit I have had thrown at me over the last 12 years. I have had several of them tell me they couldn’t live like I do and that they would rather top themselves. I think, they believe that is a compliment but all I hear is that they believe the quality of life I have is shit and nothing could be further from the truth. As others have said long before me, “life is what you make it”. You carve out tiny pieces that fulfil you whenever and wherever you can.

I have noticed after the last two Physiotherapy sessions that it is taking me longer to recoup the energy expended by attending. So that on top of everything else is probably what has caused me to be knocked on my arse. I know this state if fatigue is more than likely temporary and I just have to ride it out. I am currently just drained.

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!