Tinnitus

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.

I am the face of invisible illness

On Saturday I posted this photo to my social media feeds. I had my Christmas jumper on as we were getting ready to take Dembe down to meet Santa Paws. 

Now this blog post is not having a go at anyone, it is just pointing out what people interpreted from the photo and what was actually going on. On posting I had a few comments stating how well I looked and that people hoped I was having a good day. They were really nice comments / compliments but the truth was I was in 7/10 pain with my joints ( that only eased up a little when sat perfectly still) and every so often I had a pain in my abdomen that felt like I was being stabbed. It just goes to show when other people think you look well there maybe a whole host of things that the few seconds in front of the camera didn’t show.

I am the face of invisible illness, unless I have ptosis or bruising / cuts on my face most people on seeing this photo wouldn’t know that I have been sick for the last 12 years. That I gave up my career due to being off work so much that I was ill-health retired. I don’t think I look very well at all in this photo. Yes I have some makeup on but I look as white as a sheet. To me I look shattered, I am putting a brave face on because all week we have looked forward to seeing Santa Paws and there was no way that I wasn’t going to accompany Jay and Dembe on this trip. I didn’t even tell Jay until we got home how much pain I was in.

When people commented that I looked well, I just said thank you. I didn’t want to have to say “well I may look ok to you but my pelvis, hips, knees and lower back all feel like they have been replaced with metal pikes and are grinding against the joints”. People ( many of my friends have invisible illnesses so get this) see a photo and decided that actually you can’t be as sick as you say you are. They are incredulous that I would drag myself out of the house when in as much pain as I was. I do it not because I am some kind of hero or that I am attempting to prove some kind of point, I do it because I want a life. I want to be able to do things with Jay and Dembe. Jay only gets two days off a week so if we don’t do stuff on those days then I don’t get to go out until the following week, it is as simple as that. Unless I was totally incapacitated I was seeing Santa Paws and getting Dembe’s photo taken. 

The problem with invisible illness is precisely that it is invisible. That means there are no tell tale signs that you can see that show that my autonomic nervous system is wonky, that I have Ehlers Danlos Syndrome or a host of other medical conditions that have come along for the ride. There are no neon signs above my head pointing out to the general public what is wrong with me. It isn’t just me that has to deal with not looking sick when they have a chronic health condition there are just so many of us who are fighting battles with our own bodies that most people have no clue about. It is exhausting and at times it feels like it is a constant battle to get people to understand or believe how much I am impacted by my medical conditions.

I knew why my joints were so bad on Saturday / Sunday / Monday and it was to do with the changes in air pressure with a storm approaching the UK. I spoke to another friend who has arthritis in her hips, on Saturday  and she was in pain as well due to the changes in air pressure. We laughed that we were so bloody predictable. I should imagine most of my chronically sick friends were also struggling with the increase in joint pain despite looking fabulous.

Our visit to see Santa Paws was thankfully very short, we were in and out of the shop in less than ten minutes. All in all I was probably only out of the house for a maximum of half an hour. As soon as we got home I was sat on my electric heated throw to try and provide some relief from the pain in my hips and knees because I was maxed out on painkillers and they weren’t doing anything at all. When my pain is related to air pressure pain killers just don’t work. The only thing that does is the application of heat, it won’t get rid of the pain completely but it will drop it down enough to stop me wanting to cry with it. 

Dembe had some wonderful photos taken.

He was a good boy and sat still for his photos. He does love a good face rub or an ear scrunch so Santa Paws hit the spot! 

Despite the pain the trip out was more than worth it when we looked at our phones and saw the photos we had captured. The bottom photo is the official photo from the shop that they emailed us. Even if I was in that much pain again I would still go out and get the photos done. Sometimes you just have to keep pushing so that you can get out of the house. I know for me there are times when I can’t get out of bed, the pain / exhaustion is just too much. I was lucky it was a day when I could push though. I would have been gutted if it had been a day when I couldn’t and we had missed this opportunity.

What the photo doesn’t show is from the time we got home ( around 10.30am) until 3.30pm I did nothing other than sit on my heated throw. I only moved when I went to the toilet. Jay got me my drinks and something to eat. I stayed in my little corner to recharge my batteries and to attempt to get the pain under control. A photograph doesn’t show you anything other than those few nano seconds it captured when it was taken. I wish more people understood that.

I am the face of invisible illness.

Balancing Act neck pain v embroidery machine

In last weeks blog post I told you all about my new toy, my embroidery machine. I’ve had it for 9 days (Tuesday) and I was very well-behaved last week. I had a quick play on Tuesday and then knuckled down to finishing off a whole heap of half-finished projects. I really dislike having incomplete work loitering and taking up space. Last week I had part made soft toys hanging around – the body parts of 15 toys to be exact and some part made Christmas stockings, along with three gnomes. I did have a really good crack at them and managed to clear all the owls, gnomes, Christmas stockings and two foxes. However one of the foxes still has his brains *stuffing* exposed as my hands have been too painful to attempt to close the turning gap. My hands are so sore this evening I am having to write my blog post using my speech to text function, which is fun!

 
My neck has at times been horrifically painful. Now I know how easy it is to exaggerate pain. People bandy around the word agony at the drop of a hat but still manage to get on with day-to-day living. When I say agony I mean no painkillers are touching it, my rib cage feels like it’s collapsing inwards, I want to puke and I can’t move very much. It isn’t like this all the time thank goodness but it can start within seconds of sitting at a table or doing anything that involves lifting my arms away from my sides. The only thing that helps is putting on my soft collar and heat. The problem with heat though is that it will trigger a hot flush or can make me feel faint. I’ve found that when it’s at its worst diazepam helps as it tends to trigger muscle spasms. As does gin but I don’t like drinking every day and I have to keep it to the bare minimum.
 
I thought the embroidery machine maybe a way of being creative without triggering the neck pain…I was wrong. Sitting in any chair where my back is not properly supported, is a massive trigger. I don’t tend to get the pain when sat on the sofa because I am not sat bolt upright. I am now waking up with the pain during the night, which means whilst sleeping something is slipping out of alignment. When this happens the only thing I can do is put my soft collar on for a few hours and hope that its enough to work as along with the neck pain I get a thumping headache. I do thankfully have a doctor’s appointment at the end of this month. I must have blood tests next week as the doctor was concerned that I possibly have vitamin deficiencies which are causing the pins and needles in my arms / hands / legs and face. However as a soft collar gets rid of all my problems I’d hazard a guess that my neck is unstable and this is the problem. Quite common in people with EDS but a nightmare to get diagnosed in the UK.
 
I had to limit my sewing to just short bursts with lots of breaks. Which meant I didn’t feel very productive at all during the week. I did manage to wait until Sunday before I played on my embroidery machine again.
 
Saturday my neck and back was awful so I spent the afternoon looking on my chromebook for free embroidery patterns. I downloaded quite a few. I also found on Etsy two really lovely Unicorn patterns. One cost me a whopping 87p! and the other £1.50. I was so proud of myself using my USB port adaptor as my new chromebook has a micro USB port, ( I’ve had to upgrade my chromebook as my mark one chromebook can’t transfer data between a USB stick and the chromebook or vice versa. It can read them you just can’t do anything with it, not very good when you have an embroidery machine that you can use downloaded patterns on). So on Sunday I decided I would give the USB stick a go on my embroidery machine. To my delight the patterns showed up straight away. I had been panicking that maybe I would have to format the USB sticks for them to be used by the embroidery machine but it all worked fine.
 
I decided I would try out the Unicorn patterns on some face cloths that I had bought as a job lot from Amazon. I already had some Madeira Avalon Film wash away stabiliser, so it was just a case of setting up the hoop – face cloth then stabiliser laid on top to stop the stitches sinking into the pile. Then place it in the hoop ensuring its wrinkle free and as taut as possible. This took me several attempts, purely as I just wasn’t feeling very confident with what I had done. The first one I messed up as I managed to sew the top right hand corner of the washcloth to the back of the design. I had to cut it out of the hoop! Apparently this is a common mistake so I didn’t feel so bad. The second one however came out perfectly.
 

I also managed to centre it on the wash cloth perfectly.
 

 
 
I did the second one later on in the day. When I started it I hadn’t realised there were 21 thread changes. The first Unicorn had been 10, so a massive difference. I loved the small details of the flowers and leaves which you can’t really see in the photo. Again I managed to centre this one properly as well. So these will be Christmas gifts. The stabiliser washes away. I cut off the excess as I will be able to use that on small bits of embroidery and then put both flannels in lukewarm water where it just vanishes. I put them both in the washing machine to ensure all traces of stabiliser had gone.
 
 
On Monday afternoon I had a quick play as I fancied seeing what the redwork would look like. 
 

It’s not a good photo and to be honest I am not happy with it. The tension is out or I have threaded the machine poorly as bobbin fill has come to the surface so there are lots of little white dots all throughout the redwork. Mr Myasthenia Kid wants to frame it and take it into work for his noticeboard. So I will cut it down and run a zig zag stitch around the edge so it doesn’t fray.
 
Today I had a go at this Christmas Wreath. The wreath came out beautifully but the “Merry Christmas” has come out terribly. Again either the tension was off or I had threaded the machine poorly. It’s all  a learning process. I have spent a bit of time this evening looking through the manual and found out lots of things I should have known!
 

 
 
I am really enjoying using the machine and learning all about it. The patterns it comes loaded with are really stunning. It’s only the unicorns that I have bought and a dear friend on instagram lent me some USB sticks with lots of designs on to copy.
 
So if I can get a balance between my neck pain and time that I can use my machines I will be happy!

Solitary confinement

I’m used to my own company, I am in fact quite a solitary character. I don’t need to be surrounded by other people, as I can entertain myself. However sometimes the loneliness of chronic illness really gets to me. I am having a wobble.

 

Mr Myasthenia Kid had two weeks off work (as annual holiday) in August, it’s the longest he’s taken as holiday in years. Normally he takes a week here and there throughout the year. Always holding some back in reserve in case he needs to take time off to look after me or take me to medical appointments. Usually by the end of his weeks holiday I am happy to send him back to work, as I have my own routine and ways I like to get stuff done. This time however I am finding hard to adjust to not having him home with me. We had a lovely two weeks together, laughing, talking and generally just being together and now the house just seems so empty and quiet. It’s been quite hard to g back to it just being me for long stretches at a time.

 

It is really hard to explain how empty the house seems, it’s not like he takes up lots of room or that he makes loads of noise. It’s just I got very used to his presence and having someone to talk to. When you are chronically sick and virtually housebound your world gets very small. You only see the people who can be bothered to make the time to see you. Being below retirement age all of my friends are working and have families of their own, so I am very grateful for the time I do get to spend with them . With the pace of life these days, it’s very easy to be forgotten about, out of sight out of mind. I found that back in 2008 when I left work, that all these people who I had known for 12 years who I believed were my friends, just disappeared. They think a quick comment on your Facebook page is a get out of jail free card, it doesn’t replace seeing someone in the flesh and having a conversation.

 

Most of my friendships are now online and I have made some truly wonderful friends. Particularly on Instagram amongst the crafting / sewing / creative community. I am lucky to have got sick in an age where to talk to someone I just have to open up my computer but it doesn’t replace the physical presence of another human being. I am grateful for the online friends I have but I would imagine they would agree that proper physical contact with other human beings trumps any other contact with the outside world.

 

I have always been quite a solitary character, my own company isn’t something that has ever daunted me. In fact there are days where I cherish the time I spend alone. I like being able to step back from the outside world but I also like to spend time in it or as close as I can. I like a balance of both but due to my health being so utterly rotten this year, I have barely seen anyone since the end of June. I have literally gone weeks and the only person I have spoken to is Jamie. Can any of you who aren’t chronically sick imagine what that is like, that the only contact you have with the outside world is with one person? It’s no ones fault, this isn’t a dig at any of my friends as it has been me doing the cancelling due to not being well enough. Is it any wonder now that after having two weeks of company I am finding going back to being alone so very difficult? I am grateful that we have the dogs but their conversational skills are very limited.

 

It’s hard to explain but my heart hurts with the loneliness and the missing Jay. I know he’s only 7 minutes up the road but the house is so quiet it  is deafening.

 

Every year around Christmas time there is always a campaign about loneliness and the elderly. Every year I want to scream at the TV it’s not just the elderly who are lonely in this country. There are hundreds of thousands if not millions of people whose lives are blighted by illness who see no one for weeks on end other than their caregivers or partners. It is assumed that if you are aged between 18-67 that you are in work but there are many of us who can’t work, who are housebound who are crying out for some company yet we are the forgotten ones. I don’t know if it is because people don’t understand chronic illness and can’t get their heads around the fact that there are working age people, who through no fault of their own do not have the social outlet of work and are just forgotten. It’s like we don’t exist.

 

I am extremely lucky I have friends who do come and visit me. I really appreciate those visits and I hate it when I have to cancel due to my health deciding to have a hissy fit. It takes a lot for me to cancel because I don’t know when they will be able to visit again. There are lots of people in my position who never see anyone. I know I am lucky, I am just sad this week as I am finding it so hard to adjust to Jamie being back at work.

 

I know given a few more days I will have got myself back into a routine and I will be used to being on my own again. I thank my lucky stars for my cyber friends who are so supportive and caring. Even though I am shit at messaging people because I am always in my own little bubble. I have an issue where I think of someone, say to myself “oh I must message them” and two weeks later I realise I haven’t. I’m currently struggling with what day of the week it is. Not because there has been a bank holiday it’s purely that I have no clue. To give you an example of how bad it is at the moment, I had no clue today was Thursday and was quite surprised when I started to get notifications on my blogs Facebook page. It was only when I looked I realised that my blog post for this week had been published. I tend to write them in advance and schedule them in to be published automatically. This morning I had no idea that it was Thursday. I do however know who the prime minister is and what year I was born! Just in case anyone is concerned about my mental status. It’s just the days are currently blurring into one.

I also know that the way I am feeling now is probably a reaction to all the stress I have been under lately. My mum has had some pretty major surgery that was needed out of the blue. Adrenaline has carried me through for weeks. Now things are starting to calm down, I have the time to spend analysing my feelings because during that time period it was just getting through that day that mattered. It was a frightening / stressful time. In a year of horribly stressful and sad events. I know I just need to get back into a routine and allow myself the period of adjustment instead of being so hard on myself that I am struggling to adapt.

 

This probably  seems quite a depressing read, I’m sorry. I have just really been surprised at the depth of feeling that Jays return to work has caused me. I don’t think in the nearly 22 years we have been together that I have ever missed him so much. Silly really as every night he is home, every morning he is here. Just at the moment being in the house alone seems a little like solitary confinement.

 

P.s Its over a week later and I am back into my old routine. I am enjoying the time I have to myself and have been really productive on the sewing front.  I have also had a visit from some friends which was really nice. Obviously I still miss Jay during the day but it’s not like the deep ache in my heart I had before. I  am much happier now that I have re-adjusted to the time spent alone.

 

Am I moaning?

I think I am going through what a lot of people with chronic illness / chronic pain go through where they wonder if they have turned into a bit of a moaner. Obviously a lot of us have pretty reasonable things to moan about but I am started to get paranoid that maybe I have crossed an invisible line from previously what was an acceptable level of moaning to an unacceptable level of moaning, for those whose lives aren’t blighted by chronic illness.

 

I usually say very little about my health on social media, its like my own dirty little secret that most days I am wracked with pain or have ptosis or feeling anxious or whatever the hell is going on that day. When I do post it’s usually because things are much worse than normal. I have posted a lot this summer about my health because things have been the worst they have been for a long time. The heat wave although helping my joint pain no end made my PoTs symptoms absolutely horrific. Every movement kicked off palpitations, my blood pressure was horrendously low in the 80/70 range most days. Leaving me feeling faint and exhausted. I could barely manage to walk some days. Many, many days were spent in bed feeling very sorry for myself. And do you know what? I get very angry  when I feel sorry for myself because I feel weak and vulnerable.

 

Regular readers will also know that my CSF Leak has come back, although it’s not at the level it was in 2016 I have had several days over the last few weeks where I have been unable to leave my bed because the pain is so intense. It makes me want to vomit. I described the pain to someone as feeling like both my eyeballs had been removed and dipped in acid then rammed back in the sockets. Whilst the back of my head feels like I am being beaten to death with a shovel. Now if you were experiencing those levels of pain do you not think, honestly that you may mention it once or twice? Or however many times that you want to. Because believe me when you are dealing with that kind of pain you just don’t care what people think.

 

Along with the pain the CSF leak brings I have also had some additional symptoms like vertigo that only goes away with lying flat. Losing my balance very easily and being unable to bend down / lean forward repeatedly as this is triggering the leak headache. As I say I am lucky it’s not as bad as it was in 2016 but it’s bad enough.

 

In the last few months I have also had my migraines return, I have ended up having to take amitriptyline every night as a migraine preventer. It’s kind of working since taking them at the start of July I have had one migraine. However my migraines have come back as if they are amped up on steroids, I have to lie in a darkened room, vomiting into my bedroom bin because I can’t get up.

 

Bizarrely I have also had my left big toe, nail fall off, out of nowhere. I had an intense amount of pain in my toe. It actually hurt to touch the nail. I lifted up the side of the nail ( I had both sides removed over ten years ago due to repeated ingrowing toenails) and the nail came off in my hand. It hurt but it didn’t hurt anywhere near as badly as it had done just before the nail came off.

 

Have I bored you yet? Because believe me I am bored with it. I feel like I am in a never-ending soap opera where shit keeps happening and I have no control over it. So yes I may have mentioned on social media a few times over the summer how fucking awful I am feeling and to be fair I haven’t even touched on about 50% of the health stuff that’s been going on of late. This is just the stuff I can think of off the top of my head.

 

Admitting you are sick on social media is a dangerous game, post happy cheerful stuff and you are judged to be not as sick as you make out. Post stuff about how fucking awful you feel and you’re moaning. You can’t win. I don’t want my life to revolve around my health conditions but there will be periods of time when it does because all I can do is just keep my head above water.  To feel that I can’t express what is going on in my life, when I can go weeks where the only person I see or talk to in the flesh is my husband, just seems cruel. It’s not that I want someone to talk to – and thank you to all those who have offered me a safe place to vent. It’s just sometimes even I don’t believe what is going on health wise. I don’t think I have ever been completely honest with anyone because there is always more than one thing going on with me. I always just give those closest to me the headline news not the full story.

 

Any way that’s me, I am bored with this subject already and if I am bored with it I have probably sent the rest of you to sleep also. Mr Myasthenia Kid has been on holiday the last two weeks ( well just over ). It’s the longest holiday he has taken in years. We’ve really enjoyed the time we have spent together. We’ve managed to work on a few projects together, which I first touched on in my blog post upcycling.

We had so much paint left that we decided to upcycle our lounge coffee table  taking it from this – those dots on it are from dog drool

To this

 

Jay did the lions share of work because I am just not physically able to. I did a small amount of painting, basically just catching the bits that he missed. We have painted the stripped pine with hard wax oil which means the wood is now water-resistant and has a lovely finish. It took several days to dry and for a while we were concerned that the top of the table felt very rough. However as the hard wax oil has dried its left a silky smooth surface.

 

Jamie’s work also got the thumbs up from John Scott and Jo Carter on the Sewing Quarter. I don’t think I have ever seen Jay so proud as when they both said how lovely the table looked. I am very proud of him as it was no mean feat sanding the table top down.

 

 

 

Not happy with doing  just the bedside cabinets, the lounge coffee table on bank holiday Monday 27th August 2018 he also painted our kitchen chairs. They look fabulous and make such a difference. And we still have paint left from the 750ml of Scotch Mist Frenchic Furniture paint.

 

I also got a shout out on the Sewing Quarter Saturday 25th August – cheers John xx

 

 

Misunderstood

 

One of the things that has always wound me up since becoming chronically sick due to a myriad of medical conditions is the complete lack of understanding from about the conditions or the way they can make me feel. Despite Fatigue being a symptom of PoTs (postural orthostatic tachycardia syndrome) and EDS ( Ehlers Danlos Syndrome) medical professionals seem really surprised when you tell them you are knackered 100% of the time, no matter how well you slept. If the people who are supposed to get it, you know the experts fail to comprehend that you are dealing with levels of exhaustion they can only imagine, then what help is there for the non medical people in your life?

 

A few years ago I really lost my shit with someone who should have known better, they asked me how I was and I said I was really tired. Without thinking they said “yeah I am really tired too”.

“ No I mean I am really f**king tired, like I feel like I am walking around in a dream” I snapped.

“Yeah I get that when I don’t sleep well” They replied

I am not ashamed to admit that I really lost my temper as at this point I was in a cycle where I didn’t have more than 2 hours sleep a night for three nights and on the 4th I was sleeping 12-16 hours but waking up still feeling drained. I was hallucinating on the third day due to the level of tiredness I was experiencing. I had discussed this frequently with the person in question, they were not unaware of the difficulties I was experiencing on the sleep front. Yet even with all the information in front of them they couldn’t connect up the dots that going without sleep for nights on end didn’t just leave me tired, they left me barely functioning. It left me feeling as though a) this person had never actually listened to me when I was talking to them or b) that they didn’t believe me when I said how little sleep I was getting or c) they actually didn’t give a shit, I was always moaning I was tired. Any one of those scenarios is not one that leaves you feeling good about yourself.

 

After losing it with them and having to educate them in the difference between my tired – it doesn’t matter how much I sleep I am always feeling fatigued / wiped out and their tired, if they have a decent night’s sleep they feel refreshed, they never tried to claim that they felt tired in the same way I did again. Now don’t misinterpret me, I am not saying my tired is special or I am the only one in the world who feels like this. Ask most people with a chronic health condition / illness / disease and they will tell you the same, that sleep no longer leaves them feeling refreshed. Yet so many people in the medical profession will deny fatigue is caused by a person’s current illness / condition and will offer another label such as chronic fatigue syndrome – that’s a rant for another day!

 

I’ve noticed now the CSF leak is back how very few people actually understand it, I am talking close personal friends who witnessed how sick I was in 2016. So I am struggling to understand why they don’t remember that I have to lie down when the pain strikes etc. It is deeply frustrating but maybe I am expecting too much of them? Am I falling into the trap of believing that I am so important that they should remember this? I am also shocked by the number of people who have said things like

“ Oh that’s such a shame after you’d healed as well”.

Whilst I have said I have self healed I have also been careful to state it was to an extent, it had never gone away completely. I was able to spend many more hours upright but by the end of the day I was getting positional headaches that would only be relieved by lying down. I would also get photophobic at the end of the day, bright lights from screens including the TV would feel like they were burning a hole in the backs of my eyes. So whilst I was aware things had vastly improved for me, I was also aware that I was still leaking just at a much more slow rate.

 

I’ve also been really clear to those around me that it was highly likely that the symptoms of a full-blown leak would come back. The leak was probably caused by me having EDS,  as I have a weakness in the dura due to a previous lumbar puncture ( the protective covering around the spinal cord and brain) there would always be a weakness. So it’s frustrating when people question that the leak has returned – like the gp did last week. There is no mistaking a leak headache once you’ve had it. It is a pain like no other, it’s the only head pain that makes me clutch my head. I also get stupid comments from people like

“oh when I get a bad headache I soldier on because I have to. Not everyone can just go to bed because their head hurts”.

That’s when you know that person isn’t experiencing a CSF Leak headache because I will be blunt there is no fucking choice with a leak headache. You know when you see medical dramas and people collapse to the floor in pain, that’s what a leak headache is like. It hits you like you been attacked on the back of a head with a shovel. It makes you drop to your knees, if I could cry with the pain I would but when it strikes I am unable to do anything because it literally takes my breath away.

 

Somedays I am lucky and I can manage a few hours upright before I have to lie down. Other days I am upright for minutes and then I have to lie down. It is not a lifestyle choice it is the only way I can survive. It’s still not currently as bad as it was in 2016 and I am determined not to let it get that bad. Before I would push through until I was at the point of collapse. Now once the head pain starts I lie down, yes it’s frustrating but I’d rather lie down immediately than keep pushing to the point where I am bed bound for days on end. The only thing that works for a lot of people with a leak is lying flat however there are those who have leaked for so long that lying flat no longer reduces the pain that they are in.

 

Painkillers just don’t work on this headache, nothing I have ever taken has ever stopped the headache and that is the same for almost everyone with a leak. You get relief when lying flat when you have a leak because the fluid is no longer fighting gravity to be circulated around your spinal column and brain. By lying flat you increase the level of fluid surrounding the brain, which is what provides the pain relief.  Somedays within 30 minutes of lying flat the pain is gone other days it can take several hours and I am still left with a headache. However once upright again the headache will return. Obviously life spent flat on your back is not very fulfilling, its reduced the amount of sewing I can do as not only does the leak cause me pain this time it is affecting my vision. Its giving me quite a bit of double vision / blurred vision. I am having to use a magnifying glass and my reading glasses to be able to thread needles ( that is whilst using a needle threader both on my machine and when I hand sew). It makes things so much slower but I have to keep my hand in because without sewing I would be lost completely.

 

I have managed to make  a few bits, quite a bit was completed before the leak started and some of it has been completed in snatched moments when the levels of head pain are low / manageable. I have been able to finish items by hand whilst lying down so that’s a bonus. So here are some photos of what I have been making lately

 

I’ve been making a lot of baby bibs, some have been gifts and others have been paid to make.

 

 

Cushion cover made before the leak started – 

Travis bag for my Instagram Friend

 

I also made some voodoo dolls for a bit of a laugh, I never thought in a million years that people would want them but my (twisted) friends have gone crazy for them. Thankfully they all know how poorly I am at the moment and don’t expect me to rush to get things done. One of these is making its way to the USA as we speak. It’s my very first item that has gone to the USA.

 

So I still managing to do some sewing, it’s not as much as I would like but it’s enough to keep me sane at the moment.

 

A trip of a lifetime part 2

As expected I am completely wiped out after our trip to Stoke on Trent to visit the Emma Bridgewater Pottery factory. We had an absolutely amazing time and I would do it again in a heartbeat but just not right now as I can barely think straight or keep my eyes open.

 

We both learnt so much from our tour around the factory. Our tour guide Jane was brilliant ensuring all our questions were answered. The staff were all great too, I did feel a little sorry for them as they must feel a little like animals in the zoo, with people parading past and staring at them. How they manage to get any work done is beyond me and shows how totally dedicated and professional they are. I don’t blame them for wearing headphones to drown out all the distractions they must have with multiple tours daily.

 

The disabled access was pretty good. A few of the doors were just slightly too narrow for my wheelchair to get through that was quickly remedied by other members of the public or staff opening up the other door (very few of the doorways were single doors). The disabled toilet was huge, more than enough room for me to turn the wheelchair around. Another bonus was that it wasn’t being used as a storage area which happens more times than I would care to mention. We also managed to bag the disabled parking spot right outside the factory.

 

This is all I can write for a minute as I really need to recover. I also managed to forget that Wednesday was my birthday – as in I would only have Tuesday and Wednesday to write this week!

 

So here are some photo’s from our day at the factory.

This is where the clay delivery comes into the factory.

These are mugs that have been removed from the molds.

 

Discarded Clay. Nothing is wasted and this will be used again.

The factory doesn’t just make mugs but also teapots, butter dishes, jugs, dogs and cats! To name a few things

 

We also tried our hand at decorating in the pottery cafe. I used sponges painted with ceramic paint for this salt pig. This type of decoration is known as (in my case badly done) spongeware.