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.
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.
Whoops indeed. It is 19.30 on Wednesday evening and I have only just remembered that I haven't written tomorrows blog post. Oh bugger!
I do have a valid excuse the last two weeks my health hasn't been great, several migraines, vertigo attacks and a back that just constantly wants to be in spasm. I have been asleep most nights by 8.30pm but only sleeping 5 hours before waking up and spending several hours wondering if I should get up or lie there frustrated that I cant sleep.
Today has mainly been spent on the sofa doing some crochet as I really haven't been up to much else. I managed to finish my Labrador that has been waiting to be completed for about a month.
I also started a blanket for a friend of mines little boy. I keep promising I will make him something and I haven't so I decided to make a blanket. Initially I started following a pattern, made a complete hash of it and decided to just style it out. It isn't looking too bad and I will post some photos when it is looking bigger and better.
Monday also marked 23 years since Mr Myasthenia Kid and I met. We have now spent half our lives together. Friday marks our 23rd anniversary of being together. We have never spent more than a few days apart in all that time. Even when I have been in hospital Jay has always managed to come and see me.
So I promise next week the blog post will be better!
Not many people know that I suffer from Tinnitus. It's not something I broadcast, probably because there is just so much else going on. I just don't see the point of throwing this diagnosis into the conversation as well. Plus tinnitus doesn't make me "unwell", it is annoying and frustrating but it doesn't make me unwell, other conditions do that. Plus when you have a list of invisible conditions adding one more of them doesn't make any of them more believable to the casual observer. However many people wrongly assume that because I don't really talk about my health ( other than here and my linked Facebook page ) that none of my conditions cause me serious problems. Which isn't the case it is just that I have found over the past 12 years if I keep talking about them people become less sympathetic and then you get labelled as a moaner or that you are attention seeker. You really can't win with long term health conditions.
I think that is part of the problem though, many of us with Tinnitus don't speak about it because unless you are talking to a fellow sufferer people just don't get it. Tinnitus is a subject only the sufferer understands and is a poorly researched area of medicine. People just can't envisage what it is like to live with a sound generated from inside your own ears day in day out. So when I read this short article online I really wasn't surprised that one in seven Tinnitus sufferers has had suicidal thoughts. Link here. Despite the fact on the whole I am able to zone out the tinnitus there are days when it is impossible and even just a few hours exposed to the continuous noise can be enough to make me wonder if it is like this tomorrow, how will I get through the day? That thought alone makes you utterly miserable, we suffer in silence, well if only we could.
My tinnitus is hard to describe it is always very high pitched continuous squeal, what doctors describe as a ringing. I would have to argue with this as when I think of ringing I think of ringing bells or telephones. I don't think of a high pitched constant noise that doesn't dim or fade. There is no break it is there from the minute I wake until the moment I go to sleep. It is the reason why I always have the TV going, even if I am not watching it and at night I have the radio going. Silence is the enemy because silence allows the sound to become all encompassing and there is no distraction from it. Just writing this blog post has allowed my tinnitus to increase it's presence because I have acknowledged it's existence today.
The only way I can describe Tinnitus to the uninitiated is, think of a noise that you find really annoying or that really gets to you be it a burglar alarm, car alarm, a child screaming, nails down a chalkboard. Now imagine that noise on a loop, the volume never decreases and there is never a break, the noise is on a continuous loop. When there is no background noise like a TV / Radio / domestic appliances running the volume increases. Accompanying the noise for me is also a feeling of pressure in my ears. When it is really bad it can feel like someone is pushing their thumbs into my ears. Other times it can feel like the air pressure is changing but the air trapped in my ears has got stuck and can't go any further. It is annoying but again it is something I can zone out from.
The first time I experienced Tinnitus I would have been about 17. As we stumbled out of the nightclub my ears were filled with a high pitched squeal. It had been loud in the club but I hadn't felt uncomfortable with the noise. My friends also complained of the ringing in the ears but mine always seemed to take longer to clear. The closest I have ever got to hearing that sound was when there are explosions in dramas on TV and the main character is shaking their head and they put that high pitched noise on to resemble the ringing of your ears. If only they knew that was the sound I hear all day every day, at one volume or another.
As a youngster I had a Sony Walkman when they first came out....good god I sound old. Although I did listen to music on my headphones I was much more into listening to audiobooks, Kidnapped by Robert Louis Stevenson was a particular favourite. It was one that my paternal Grandmother gave me. I can't remember the name of the person reading the book but I loved it and it would regularly reduce me to tears in a number of places from the sheer emotion contained within the narrators voice. My parents were also very hot on the fact that loud music from headphones could cause deafness so whenever they felt that my Walkman was too loud they would get me to turn it down. So I wasn't one of these people that had headphones blaring all the time leading to tinnitus in later life. In fact if anything I am very sensitive to noise and I am always telling Mr Myasthenia Kid to turn the TV volume down!
Having done a very quick search today looking for a link between EDS and Tinnitus many articles state there is but don't say why. Tinnitus is given around one sentence whilst other symptoms are discussed at greater depth. That seems to be the case with Tinnitus very little research or thought has gone into it over the years let alone its connection to EDS. Obviously with EDS affecting collagen there are bound to be issues with hearing etc but many doctors even hospital consultants seem to be unaware of this issue. It can't just be me who is suffering from EDS and raging tinnitus. In this patient information leaflet about EDS it simply gets the one word as in Tinnitus. Read it here.
Apparently I am unusual in that I have Tinnitus in both ears. I had no idea that was unusual until the audiologist told me. I have lost around 10% of my hearing and I was offered hearing aids as a way of blocking out the noise of the tinnitus but I declined. However I am having more days where the volume of the tinnitus is becoming louder making it harder to zone out from it. So it maybe something I consider sooner rather than later...if you can still get hearing aids on the NHS. Knowing my luck they will only give me one, even with both ears affected.
I do remember one of my ex friends suffering from a bout of tinnitus once and almost losing the will to live due to it after just a few hours. She did have a very low capacity for pain or anything that made her life deviate from it's usual course. Oh and a taste for the melodramatic. Whilst I sympathised at the time I did point out that this was something that many people including myself live with day in, day out and she should really pull herself together as the chances were she would wake up tomorrow and it would be gone. I was right, thankfully hers did pass but it did make me realise that some people just don't realise how good they have it if they fall apart at the slightest impediment to their day. How on earth would they cope if they developed a serious health condition? I have no clue but I am sure the rest of us would hear all about it.
I know I am lucky that my go to coping strategy has always been "ignore it". Unless something is causing me pain or interfering with my life in some way I will barely give it space. I am a firm believer that acknowledging somethings gives them power over you. As in like today, my tinnitus had been at its usual level all day but it wasn't until I read the article and thought about my tinnitus that it's volume ramped up and I became aware of the feeling of fullness in both ears. When things have no way of getting better and aren't a serious issue for me just getting on with life has always been my go to. There are so many things wrong with me that if I let each little thing impact me I wouldn't get out of bed in the morning. I don't say that to be some sort of hero as there are plenty of other people much sicker than me that are practising the same way of going about their lives. Ignore it until it gets so big that we can't ignore it. Only pain and vertigo ( oh and low blood pressure - I mean faintingly low blood pressure) will stop me in my tracks. Everything else I will push through.
Obviously never ignore any symptoms that worsen suddenly or are new to you. If they are concerning you always get them checked out by your doctor.
There are days that Tinnitus gets me down, there are times I would give my right arm for silence. I haven't known silence for years now, I would like to be able to hear quiet sounds without the Tinnitus masking it. I am very lucky that is really the only impact it has on my mental health. But can quite understand if Tinnitus is impacting your livelihood or passion that it would have a much bigger impact on your life than it does mine. I can totally understand why it would provoke suicidal thoughts. On the odd occasion where my tinnitus is so loud it is preventing me from hearing anything else I have had a thought flash through my mind of "shit what if this doesn't go and is like this everyday now?" I know I couldn't cope with that. Thankfully it has always dropped back to its normal level at some point during the course of the day.
I have no magic words of wisdom on this subject, only that you aren't alone if you suffer with this condition.
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