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.

I hate 2020

I hate 2020 with a passion not just for Covid-19 and not being able to see anyone but I also hate it because it has been a year of non stop health problems. It is driving me insane and I am starting to feel that “normal people” / “well people” or even people that don’t know me that well are thinking that I am either a) exaggerating the impact on me or b) I’m attention seeking. I rarely say much on social media about my health due to this. I am probably more honest on Instagram than I am anywhere. But a few times i have mentioned health issues on my own account on Facebook and now I am left doubting myself, worrying that people will think awful things about me. Believe me if I wanted attention there are a million and one other ways I could get it, being sick wouldn’t be the one I would use!

So this year I am struggling with Migraines, Menopause ( I am just 4 months away from officially being in it although technically I could have been in it at any point in the last 5 years, with the pill stopping my period I can only properly count from last December), bowel adhesion’s, ptosis and now my absolute favourite my CSF leak is back. I’ve had two good, well reasonable years with minimal symptoms. My symptoms when they have shown up have been in the evening with a dull headache and light sensitivity. Suddenly out of the blue last Thursday, my head started hurting and when you have had a spinal fluid leak you know that headache there is no confusion, the pain is like nothing else.

To describe a CSF leak headache is difficult, purely because there is really nothing else in the world that feels like it other than a post lumbar puncture headache or meningitis. I am extremely lucky at the moment that it is mild, strong enough to have me lying flat but not hugging the toilet bowl waiting for death. I was on my embroidery machine when I lent forward as I moved back my brain felt like it had been slammed between two bricks . Then my eyes were struggling to cope with the LED lights on the machine. I finished up as quickly as I could and then lay down on the sofa. Slowly over the space of an hour the pain eased. Although that was a good thing, it also chilled me to the bone as only a CSF leak headache eases so quickly on lying down. So my worst fears had been confirmed.

When Jay got home from work I spoke to him about it. He replied with “well don’t panic just yet you get days where it plays up more than ever”. Whilst he was right , this was different, this was stronger than it has been before. I could hardly blame him for trying to be optimistic maybe I would have been had I not already suffered two migraines that week and forgotten to write a blog post. It hadn’t been a good week and now it was getting worse. I replied that yes he was probably right and maybe a good nights sleep would help. I really hoped that it would be but I knew in my heart that it wouldn’t.

On waking up on Friday morning, I didn’t get the electric shock like feeling like I would back in 2016 when it was at it worst. I managed several hours upright before the pain started. I am afraid I pushed it and stayed up longer than I should have done. I did exactly the same on Saturday, staying upright and not resting like I should have done. I don’t know why I did it. Probably I was in denial and I was determined I wasn’t going to let a “little” thing like a leak get the better of me. There were things I wanted to do, I refused to go back to the dark place I was in, during 2016. 

However health problems don’t work that way, when things are bad you can’t pretend they aren’t happening. There is no distracting yourself from the pain when you have a CSF leak as the longer you try to ignore it the worse it gets and it wont stop until you lie down. If you push it too far eve lying down won’t stop it. From Friday I had increased my salt intake upping my salt tablets back to 10 a day, I had also increased my caffeine intake. Both caffeine and salt increase CSF production.

With the Menopause involved this time increasing caffeine has the added bonus of triggering hot flushes. The more caffeine I consume the worse the hot flushes are getting. Which is just fucking fantastic as caffeine is the only thing that helps quite quickly. So I spend the whole time stripping off due to getting overheated and then no sooner has the flush started I am then freezing cold. Hormones have a lot to answer for.

By Sunday I had completely blown it, my head felt like it was in a vice my eyeballs felt like they had been set on fire every time I looked at my phone, used my laptop or watched the TV. I ended up spending all day lying down either in bed or on the sofa. But as like in 2016 and 2018 ( my first re-occurrence of the leak), my back due to EDS wouldn’t let me do more than 12 hours flat. I felt so down about the pain being so bad and I really felt like maybe I had been an idiot fighting against it for three days . 

Thankfully 24 hours of lying flat has got it to a better place but I am still having to lie down much more than I want to. I managed 4 hours upright on Monday and 3 hours on Tuesday before lying down.  I was much more careful on Tuesday ( today) as dog training is re-starting . With it being held in the evening which is my worst time for the head pain, I am having to rest a lot to ensure that I don’t end up having to battle through the pain whilst there. 

To add a little variety into the mix at 6.50am I woke up in agony with bowel adhesion pain. I keep getting bouts of it out of no where. I ended up having to wake Jay up so he could get me a drink and a hot water bottle as I couldn’t move without making the pain worse. I took some Buscopan, Oramorph and thought there would be no way I would get back to sleep and then the next thing I knew it was 9am and Dembe was snuggled up beside me. I can’t work out what the hell is going on with this year. It is exhausting me with all the plot twists. If my life was a TV drama most people would be complaining it was unbelievable, no one is that unlucky….I’ve also lost my hospital consultant as the health authority he works for has decided that he is not allowed to see patients outside his catchment area. The hospital I used to go to before him, has no PoTs clinic at all as the consultant has retired. So basically if you are outside Plymouth you have been thrown ti the wolves.

But apparently my health needs no consultant input, as I am such an easy patient to manage! I hate 2020!

Apologies

I will hold my hands up and just say it…..sorry! Due to having a migraine Monday and again Wednesday I simply forgot to write a blog post. It briefly skipped across my brain late yesterday and I thought yep I will do that and that’s as far as I got.

I’m still feeling pretty rough at 6am Thursday morning the day that this should be published. The sumatriptan works brilliantly in halting the head pain but it doesn’t stop all the other stuff that comes with them. The fatigue, the hunger that you just can’t satisfy, the neck and head pain – occipital neuralgia , the confusion just to name a few.

I may have just been very unlucky this week or I may have worked out that Dairy and Alcohol are two triggers. Both of which I am unhappy about. So now I am going to be on a detox diet from both, reminding myself when the craving strikes that both trigger migraines…..possibly.

Apologies I don’t have more for you this week.