Neck pain / back pain / whiplash?

I hate to admit it but I am really struggling with my pain levels at the moment. For some reason towards the end of last week my neck started playing up, waking me from sleep because the pillow felt like a house brick and I was unable to get back to sleep due to the pain. It is interfering in everything I do. It is very rare for me for pain to cause me to stop eating, I am famously the girl that was still hungry and eating when I had a partially obstructed bowel. Basically nothing stops me eating or drinking ( normal fluids not alcohol ) other than my menstrual cycle years ago when I used to get through the first two to three days on sugary tea or coffee. So believe me when I tell you that the pain is so bad I am struggling to eat.

Since around Wednesday last week I have woken up at 2.30am, with the feeling that my pillow has been swapped by some sort of sadistic fairy, to a house brick. The only way I can describe the pain in my head and neck is that it is like someone has hit me with a shovel. I spend the next few hours trying to fall back to sleep but I can’t get comfortable. It doesn’t matter how many pillows I have, rolled up bath towels used as a neck support I can’t get away from the pain in ,y neck. I started amitriptyline a few weeks ago because I couldn’t tolerate the neck pain any longer. It has taken me a few weeks to get it up to 30mg a night and then it just takes the edge off the pins and needles in my arm and hand. I have to up the dosage slowly because I end up with the dreaded amitriptyline hangover the next day which leaves me feeling disorientated and pukey the following day.  I have permission to go up to 50mg a night from my gp, I am loathe to go that high when I am not supposed to be on this medication due to having PoTS. I was offered gabapentin but that turns me into a zombie and does nothing for me, I didn’t want Lyrica again as that took me an age to come off. So amiltriptyline was the only option I was given for the nerve pain I have.

What really grinds my gears is that this pain has not been caused by something I have done, this was caused by the twat that reversed into out car, back on August 11th. I had a really crap assessment done by a private doctor over WhatsApp back in September ( a call that lasted all of 8 minutes 22 seconds!!!!) who informed me it would take a year to get better from this injury. However this doctor knew absolutely nothing about Ehlers Danlos Syndrome and didn’t ask me if I had any previous issues with my spine or neck. In fact he barely asked me any questions at all if I am honest. I came away from that consultation and burst into tears. I had prepared notes, printed off my medication list but once this doctor found out that I didn’t work he wasn’t interested. Every time I tried to provide an answer to a question or give him some information he talked over the top of me. To put it bluntly this doctor doesn’t even know that I am a wheelchair user or that I use a mobility scooter when outside the house that is how little he asked me. Nor did he ask me how the accident had impacted me. He was only interested if I had taken time off work which was obviously a no.  I was so distressed by the lack of an assessment, as this will be used to base my claim for injuries that I sent an email to the insurance company telling them what a crock of shit the whole thing was. I was told there would be a report provided within 21 days and that they would send it to me so I could check for inaccuracies. I am still waiting.

The pain in my neck, back and base of my skull is so bad today that I have had to resort to wearing a soft cervical collar. I really try not to use this as I am always warned by physio’s and doctors that this will leave my neck muscles weaker in the long run. However this has always been the best form of pain relief for me as it lengthen things out and takes the pressure off my neck. 

On Friday last week I ended up in agony from raising my arms when threading my embroidery machine. I got stuck with my elbows raised and my ribs feeling like I had suddenly been put into a very tight corset. Every time I went to move I felt like I had been zapped with a cattle prod. In desperation I filled out an e-consult form, the current way to access the doctors surgery, it was late at around 2pm, so I didn’t think there was much chance of me actually getting a response. Unfortunately I was right, my back did ease off a little bit, probably due to the amount of gin I drank as a last ditch attempt to get the muscles to relax after trying everything else in my arsenal first. I did get a call at 9.30am on Monday and got some diazepam. That has stopped the spasms in my back but it hasn’t stopped the muscle spasms in my forehead, it is these that lead to horrendous headaches and occasionally migraines like I have endured today. 

I am writing this on Tuesday, Mr Myasthenia Kid has already told me that I don’t have to go to dog training this evening but that would mean I had missed the last session of the last two courses. The last one I missed was because I was in hospital being checked out the day of the accident. I have already missed one session from this set of 6 due to being unwell, I have never missed so many sessions as I have this year but then my health has been an unmitigated disaster this year. I know my health is poor but I like to pretend it isn’t and when I am confronted with the fact it is shit like I have this year it makes me miserable.

I had got to a sort of place where my neck / back wasn’t getting any worse but it wasn’t getting any better. It was liveable and although impacting what I could do, I could still do ( for a limited amount of time ) the stuff that I like to do craft wise. However now I am really struggling again and I feel like I am back right at the beginning again of when I first got injured and have absolutely no clue why last week it got so much worse again.

If you couldn’t tell I am seriously pissed off today.

New Things

Six weeks ago I did something crazy. It had been in my head since before Christmas and I had been spending an age mulling it over too scared to say it out loud. It took until after Christmas for me to even say to anyone what I had been dreaming up.  One day I mentioned to my husband what my idea was, he assured me it wasn’t that crazy and that if I didn’t try I would never know.

To some this idea won’t sound that crazy at all but believe me it sent my anxiety into over drive. My big plan. my crazy idea, wasn’t really out there at all. I just wanted to start up a monthly coffee morning for like minded crafting friends who would like to learn new skills, solve a craft problem, get hints and tips etc. I will be honest  through 2019 I was a bit of a hermit, some of it self imposed, some of it well read my post Reflections and you decide. I was going months and I mean months without seeing anyone other than Mr Myasthenia Kid or Dembe. Ok so that is a bit of a half truth there as we were going to dog training but a 5 minute conversation once a week with someone other than my husband is not socialising. Especially when the topic is just Dembe or dogs in general. My mental health was being crushed, although creatively I had never felt so fulfilled as my sewing / embroidery had taken on a new direction. My anxiety was really getting bad around social interactions because I literally just wasn’t seeing anyone.

Chronic health conditions impact so much of my life, it limits the time I can spend doing it. I would love to run a small business selling items but my body couldn’t cope with the work load that something like an Etsy shop would produce. I can’t do craft fayres as I couldn’t sit there all day without then being sick and exhausted for weeks after. Crafting is my life it gives me the reason to get up and keep going every morning. Without it I would be very lost. However part of crafting is sharing your triumphs and disasters. Whilst there are various Facebook groups ( some of which are very supportive, others are like a nest of vipers) it isn’t the same as actually speaking to a real live human being. I can no longer drive as I lost my driving licence 5 years ago due to my medical conditions. Public transport is too hard going for me. I rely on Mr Myasthenia Kid if I want to go anywhere so attending guild meetings hasn’t been easy due to his work schedule. I wanted something that combined my love and appreciation for all crafts and a social atmosphere. So I took the plunge.

I knew the name I wanted for the group – “The Stitchin’ Bitches”, I also knew due to the size of my house numbers would have to be limited, if anyone wanted to come at all. A friend of mine reached out regarding a crochet issue she was having, we are both self taught and only in the last few months. I casually mentioned in my response that should I start up a group for us to meet and discuss our crochet ( and other crafts) would she be interested. She almost bit my hand off, she would be extremely interested in it and what a good idea. 

Even though I had this positive response I still left it at least a week until I built up the courage to put up a post on my Facebook timeline asking if there were any like minded crafter’s like me that wanted to meet up on a monthly basis and do crafts together. Be it crochet, knitting, embroidery, sewing. I had a lot of responses but it was from people in different parts of the country saying that they wished they lived near me as they would be there like a shot. Initially responses from local friends was slow, embarrassingly so. I was starting to think that maybe there wasn’t any desire from any of my friends ( other than the first one I spoke with). Determined not to take the lack of response from my first post as the definitive answer I posted several more times. Each time I got responses from people outside the area that I lived , even the friends I have made world wide via various health forums wanted to come. But in the end I had 4 people interested which was a good number – remember I live in a tiny house.

I set up a private Facebook group for us all to be able to post in and then set up a poll so that they could let me know what days suited them best to hold a meeting. I had envisioned when I first embarked on this idea that it would be one hour a month – which for me was fine as it would give me time to recover and give me some social time. We decided Mondays were best and set the date for our very first meeting of The Stitchin’ Bitches – they all loved the name by the way! I think we sort of sound like a Country and Western group LOL!

Initially it all seemed fine until my anxiety kicked in the day before our first meeting on Monday 10th February. I was just terrified that the meeting would be a flop, that people wouldn’t speak to each other or that after 30 minutes people would be racing to get out the door. I was so anxious I barely got more than 2 hours sleep, I tossed and turned all night. This would be me hosting an event ( thankfully all my friends know I am poorly and will pitch in with making drinks etc if needed)  without my safety blanket of Mr Myasthenia Kid. Also some of the people attending I hadn’t actually seen since I left work in 2008. For me it was a huge gamble. I am always really anxious when people come to the house anyway, I worry that they think it is dirty or uncared for etc. Its hard to keep on top of stuff when you aren’t well and all the DIY stuff falls on one partner. So I know there are some places crying out to be redecorated etc. I was also worried about people judging me, on the outside I don’t look sick but every day is a battle of some sorts. I worry that people think I am taking the piss because no one ever see’s me when I am really poorly.

Monday 10th February seemed to come around so quickly. By the time 11am arrived I was pretty knackered just from the sheer anxiety creating this “event” had caused. I really shouldn’t have worried. I also wasn’t the only one who had been anxious, a friend confided in me on leaving she had been terrified to attend. As for thinking they would all be racing for the door at 11.30am nothing could have been further from the truth. It was 13.30 that the last person left and the first person had only gone around 15 minutes before that. I had been concerned due to the fact that we all had one work place in common that we would end up discussing that but again nothing could have been further from the truth. It was barely mentioned and that was only as people left. It was just so lovely to have a few hours with people whose eyes didn’t glaze over when crafts were mentioned. I know I can get very passionate about my projects, so it was nice to answer peoples questions about the techniques I had used etc. It was equally nice to see what my friends had been up to. For all of us it was so uplifting to get out of the house and socialise – obviously I didnt go far!

The really nice thing was that as the meeting / gathering was drawing to a close one of the lady’s said “Rach, any chance we can do this once a fortnight? I don’t think once a week is enough”. Everyone else was in agreement also. I said immediately that no one would “have” to come to every session especially if they felt fortnightly was too much, that I was happy for people to dip in and out as needed. But the buzz the morning had created was so great that we set up the next few weeks worth of meetings. I was so proud of myself and what our little group had achieved. I posted on my Instagram account about it and now several other people dotted around the country have decided that they are going to do the same thing. Which is really lovely as it is such a boost for your mental health and to stop the isolation that is all too common in the world.

Today (Monday 24th March) we held the second meeting and today we had the grand total of 7 people here (including me). Dembe was like a dog with two tails, with all the love and fuss he got from everyone. Today two members learned how to start to crochet – slip knot, chain stitches and then double crochet ( UK ). Another lady had a refresher on crochet and learned how to do a Granny Square for the first time. In the corner a lady was being taught to knit. Mr Myasthenia Kid is on holiday this week from work and made himself scarce for a bit having a wander around the town. However he said the buzz and positivity he got from the room when he came home was amazing. He said he was so proud of me for being so brave to try and do something to end my own social isolation. He did make us all laugh as when he walked in he said “good god is this the budget version of the Playboy mansion”. Considering our age ranges were from 21 to 70’s it was hilarious. 

We were also spoiled by a new member who brought homemade scones, jam and cream for us to have as a crafting snack! And bloody gorgeous they were too. I had decided yesterday to make everyone little paper tissue holders as a way of saying thank you for coming and making it such a success. 

I can’t lie after every meeting I have been utterly exhausted. If I knew that it wouldn’t impact my nights sleep I would go for a nap in the afternoon. Mondays after are written off with me having a lazy restful afternoon on the sofa but mentally I feel so uplifted and happy. I am so glad that I pushed myself to do something totally outside my comfort zone and I hope I inspire others to take that chance and do new things.

****

On Thursday 20th February, I had the worst migraine I have ever had in my life. It was so bad that I am actually suffering from amnesia caused by it. I have “lost” most of Wednesday 19th, the majority of Thursday 20th, Friday 21st quite a bit is unrecoverable as is Saturday 22nd.  It is only from yesterday on-wards that I can recall anything that happened during the day with any clarity.  I won’t lie this has scared the shit out of me. Which is why I haven’t done a huge detailed blog post because basically I don’t know what happened to last week. I have a gp appointment booked because I need to know that this was just a horrific migraine and that I can be referred to see a headache specialist or if it was something like a TIA that can also be looked into. Having Google at our finger tips can be a curse and a blessing but as I can’t account for much of last week and this has never happened to me before with a migraine I can’t just ignore what has happened. Anyone who knows me also knows that I don’t run to the doctors every 5 minutes so it has really shit me up.

As soon as I know you will know.

Lock down again?

So it seems we are looking down the barrel of another lock down here in England ( Scotland, Wales and Northern Ireland have devolved governments so make their own decisions ). Not that the first lock down made much difference to my life other than having Mr Myasthenia Kid home with me for 7 weeks whilst he was shielding as he is at higher risk from Covid than me. People don’t seem to understand that I only leave the house for dog training on a Tuesday night or going out in the car and staying in it whilst Jay walks Dembe. I only shop online, I actually can’t remember the last time I went food shopping or clothes shopping if I am honest. So lock down changes very little for me.

Mr Myasthenia Kid is classed as a key worker with him being in retail, so even if we do head into a stricter “circuit breaker” ( who is paid to come up with this shit?) lock down of two weeks the only thing that will change is that I won’t go to dog training for 2 weeks. I know many people in the chronic illness world whose lives are identical to mine or worse,  a lock down isn’t something we fear, getting Covid-19 and being assessed as not worth saving due to ventilators not being available is.

It seems that Covid has already made it’s presence felt again in my sleepy little town. During the first wave we were aware that there were many people coming down with it although I wasn’t aware of any deaths ( that doesn’t mean that there weren’t) . Yesterday the gossip at Mr Myasthenia Kids work place was that someone had tested positive at a local gym. There were now a few people having to get tests and self isolate. Jay joked as it was a gym and he is so unfit as are many of his friends it was highly unlikely that he had come into contact with them. It doesn’t stop me panicking though. 

His job in retail put’s him at higher risk, just from the sheer volume of customers coming through the door and number of staff. They have already had staff members come into work with Covid symptoms, despite all the government infomercials, news programmes and his work place carrying out regular briefings telling staff what to do. It makes me so cross that people have done this especially when there is no reason to, his workplace have been excellent in ensuring staff members do not lose pay if having to isolate or if they have a positive Covid test. 

He along with his colleagues are also at risk from those customers who should be self isolating due to being in contact with a Covid positive person or having Covid themselves who for whatever reason decide that they have to come shopping. I know some people don’t have a choice, they are a single parent, live on their own and just don’t have anyone who can help them out in an emergency. During the first lock down there was plenty of support available for people who had no one to help them out, now however people seem to be under the impression that the danger has passed and no one is isolating. Despite the fact the city next to us is a Covid hot spot due to the number of university students and staff who are having positive Covid tests.

Please don’t get me started on the Covid deniers or the ones that insist that it is no worse than flu or that just a tiny amount of people get it. I help admin a group on Facebook for people with PoTS ( postural orthostatic tachycardia syndrome ) / Dysautonomia and we have had a sudden influx of people who are suffering from what is currently called Long Covid / Covid Long Haulers.At one point last month we were having at least 5 requests a day from people who had developed PoTs post Covid. We normally get 5 to 8 requests a day to join, so it was crazy that we had so many people turning to us for help as they were getting nowhere with their own Gp’s. 

Long Covid sufferers tend to be  people who were fit and well before getting Covid. When they had Covid they were poorly but not poorly enough to be hospitalised however instead of getting better as they and everyone else expected they have gone on to develop a whole host of strange symptoms. Many of them have developed PoTS or other Dysautonomia symptoms. Their lives have been changed forever due to these symptoms and apart from the occasional newpaper article or short segment on TV or radio very little is being said about these patients whose bodies have been ravaged by Covid.

There has been talk in Parliament that the government / NHS will set up clinics for Long Covid sufferers to help them. In some areas these have been implemented but the majority of the country has been pretty slow. Of course this is all very galling for those of us who have been left with no consultant at all whilst CCG’s & hospital trusts hold pissing battles over who is allowed into their area’s for treatment. Since June I have had no consultant to over see my treatment for PoTS/ severe autonomic nervous system dysfunction, the CCG where my consultant worked has banned him seeing anyone outside that city’s postcode. The hospital nearest me, has no consultant for PoTS as the last consultant retired. The story is similar up and down the country with many CCG’s and hospitals refusing to fund PoTS clinics stating that it is a condition that can be managed in primary care / general practice, yet the majority of the medications for PoTS are Consultant Prescribing only. So if you have no consultant you may not get medications like Ivabradine / Midodrine / Pyridostigmine the latter being an off label medication, it is primarily used to treat Myasthenia Gravis. 

So we now have a situation where PoTS clinics are desperately needed up and down the country ( because those still in operation are buried under new referrals and existing patients) and the hospital trusts and CCG’s have been closing them down or refusing to replace consultants that have retired. It is a perfect storm. And predictably it is leading to bad feeling in PoTS groups, where people believe that they have suffered for years, are still suffering and are struggling to be referred to a Consultant yet those with long Covid are having the red carpet rolled out for them. The animosity isn’t against the long Covid sufferers but the decision makers who have decided these are more “worthy” than them. Personally I see it as an economic / ideological move, if we have thousands of people now economically dependent on the state for benefits, lots of people that have previously never experienced this awful system you have an issue that you may lose your voter base. Some people who voted for this current shower of shite are going to have a rude awakening when they find out living on benefits means living in poverty and not the lives shown in the usual Government propaganda. God, I must be getting old to be so cynical. 

It isn’t hard to see why some PoTS patients are upset that it would appear long Covid sufferers are being taken more seriously than they are. Personally I am happy with whatever brings PoTS to national attention but I do want the same facilities that are being offered to Long Covid patients to all PoTS patients, many who have had to battle for years for a diagnosis. Something good has to come from this surely?

So we wait whilst the government makes up it’s mind on whether we are heading to another lock down or not.

Apologies for the blog post doubling up there. I have no idea what happened.