The storm has passed

The last 4 months have been a particularly trying time for me. Obviously some stuff I have alluded to such as my mum being diagnosed with cancer however there have been other things going on as well, which for reasons of my own privacy I won’t be sharing. I do try to share as much as possible with my readers but sometimes you have to hold a little of yourself back. When I write I always think do I care if my worst enemy has this information? If the answer is no then it gets written about, if yes well it never makes it to the blog.

I do like to have a division between my world and my life in cyber space. Like all people do in real life we have the public face the person we choose to present to the outside world and the private face, the person who only the very closest people to you get to see.

Thankfully what has been going on behind the scenes has now resolved and life can move forward again. Its feels like a massive weight has been lifted. For those 4 months I didn’t feel like me at all but someone who had a huge black cloud hanging over them constantly. I really didn’t feel like I was living and enjoying life merely  surviving. The anxiety the situation induced was off the chart. I found that the only place I felt any happiness was sat at my sewing machine, purely because you can’t ruminate ( well I can’t) and sew. My attention has to kept solely on the job in hand. When my mind wandered so did my stitches! Sewing yet again has got me through a very difficult period in my life. It is just such a shame that as I mentioned in last week’s post sewing is at times getting painful, causing me pain in my neck, back and causing pins and needles in my hands, arms and face. I now have to restrict the amount of time I spend sewing. I have found wearing a soft collar prolongs the time I can spend sewing.

Since July I have been sewing like a woman possessed! I decided earlier on in the year after my success in selling Star Christmas Tree toppers in the run up to last Christmas, this year I would experiment with opening up a little “shop” in cyber space. I’m not on Etsy – at the moment I couldn’t handle the stress that would involve! I have set up a little Christmas shop on a social media platform where my customers are by invitation only. As this is an experiment to see what sells and what doesn’t I have limited the numbers. It’s also filled with people who know me, who know that my health is very up and down and who wouldn’t hold it against me if I was slow to respond to a query etc. If I set up an Etsy shop I wouldn’t have customers who knew me and could be put under a great deal of pressure by their demands.

It has really given my self-confidence a boost. To this day I am amazed that people want to but the things that I make. Not that I think my items are crap – my heart and soul goes into them and I am my own harshest critic. I just can’t believe in 13 months how far I have come. I still have days where my self-esteem has a wobble but that’s life and I can deal with that. Living under a black cloud for 4 months is not something I want to repeat in a hurry. I didn’t feel like me at all, I didn’t act like me at all and I can’t have been a bundle of laughs to be around if I am perfectly honest. Its amazing what a difference a week can make and I feel like I am me again.

I’ve been making all sorts of things for my cyber shop since the end of June beginning of July,

 Christmas bunting / garlands

Christmas Tree toppers

Christmas stockings

Soft toys

Travis bags in various designs

 Lavender Ravioli

Norwegian Santa’s / Christmas Gnomes

Christmas tree decorations

Christmas door wreaths

 

I am still making a few more bits and pieces and will do throughout November. Then at some point I need to bind two lap quilts I made for our sofas, make Mr Myasthenia Kids fabric advent calendar. Plus make family and friends Christmas presents.

And as if that wasn’t enough I treated myself to an embroidery machine, which I am calling the beast V2 as my Atelier 5 (janome) is called the beast. I can’t wait to start learning how my new machine works. I bought a Brother Innovis 800e which is a mid range stand alone embroidery machine. It has a lovely big hoop which means I can work on several sizes of design. Jamie has already put in a request that he gets some new handkerchiefs that have been monogrammed by me! It has so many inbuilt designs and you can buy more designs on-line or can get them for free.

 

 

 

 

However buying the embroidery machine also meant upgrading my Chromebook. My old Chromebook couldn’t transfer data onto a USB stick nor download information from it. I tried resurrecting my old laptop – which ran on windows 7 ( so it was basically an antique) but it was painfully slow and I find windows as an operating system, a pile of shite and illogical, especially when you have been using Chromebooks and chrome ever since they were on sale in the UK.  I spent a small fortune on the Chromebook its an Asus Flip, so you can turn the keyboard behind the screen and it works like a tablet. It is amazing how the technology has advanced over the years.

New Chromebooks can transfer data to and from USB sticks, all I needed was a USB hub as the Chromebook comes with a micro USB port. I picked up a reasonably priced one from the place that has the same name as the South American River and within seconds was transferring data between USB sticks like a pro. It is something I have never done before, there was nothing to learn, no drivers to install the screen simply tells you a new device has been located and do you want to open it. I felt like the king or should I say queen of the world teaching myself how to do this in seconds. With me and windows stuff never took seconds it could take months or even years for me to learn the most basic of tasks as it just never felt logical to me. I often felt like I was being expected to juggle and balance a plate on the end of my nose!

So although my new Embroidery machine arrived yesterday ( Monday ) I didn’t have a play on it. By the time it arrived it was close to 3pm and my back had given out completely. I must have been a sorry sight as the delivery guy brought it into the house for me. Thank you DPD! It stayed in the box another hour whilst I waited for the back pain to subside and to stop the feeling that my ribs were being crushed. I then very slowly unpacked it and set it up in my sewing room come kitchen / breakfast room. I am hoping later on today will be when I get to have my first go on it.

And hubby and I had lovely birthdays last week. Happy birthday dad xxx

My week

 

Over the last week I have been quite unwell, culminating in an emergency appointment at the doctors surgery yesterday. As is usual for me it wasn’t clear what exactly was wrong. I had severe abdominal pain in the lower right quadrant – I’m no stranger to abdominal pain, I have suffered with it for as long as I can remember. I can remember countless home visits by the gp where I was yet again diagnosed with a grumbling appendix.

 

I don’t think what I had yesterday was my appendix – its still sore today ( just not as bad). I think it is actually a cyst on my ovary, the doctors found one in 2015 but as it was only 2cm in size the protocol was not to monitor it. For years every few months I would get a pain in my lower right side. Loads of times I was convinced it was my appendix but after they found the cyst I realised that this made more sense. I started to track when I had the pain, it was always between the 20th to the 28th of each month and would last a few days. However over the last six months every two or so months the pain ramps up. I have a reasonably high pain threshold and it takes a lot to make me go to see the dr, let alone ring them up and demand an appointment. Normally I’m the patient running in the opposite direction.

 

Yesterday I couldn’t stand up straight when it was at its worst and when I was on the phone to the duty doctor I was curled up in a ball on the bed. I didn’t just have pain on the right side but the whole of my insides felt sore and were burning.  Thankfully the duty doctor agreed that I did need to be seen and set an appointment for an hour later. Thankfully Mr Myasthenia Kid was day off so he could drop me down there. I also had a pot to piss in ( ha ha ha ha!) my old gp used to give me a sample pot to use when I suspected I had a UTI. I forgot yesterday to ask for another one to replace it.

 

By the time I got to the doctors appointment the pain was already decreasing. I felt a bit of a fraud to be honest. Whilst I am typing the pain is ramping up again, I’ve taken pain killers so hopefully it will settle it again. I haven’t got a temperature and today I am not feeling unwell. I don’t feel right – I think all of us with a chronic illness or condition know when our bodies aren’t feeling right. Mine hasn’t felt right for a few weeks, initially I put it down to anxiety, stress, then the heat. But I know in my heart of hearts it’s more than that. It’s like the time I kept telling my old hospital consultant that I felt terribly unwell, I didn’t know what it was but he needed to listen to me. The arrogant twat didn’t, he sent me reluctantly for blood tests. Five days later I got a snotty letter telling me all my bloods were normal. Three days after that letter he had to backtrack because my prolactin levels were stupidly high. See I knew that something was wrong, never ignore your instinct about your health.

 

My urine was dipped and nothing was showing. I then had to get up on the couch and be examined. I knew it was coming, I made sure that front and back bottoms were scrupulously clean as I feared gloved fingers could be inserted into either orifice. Luckily I avoided that one! My stomach was palpated, as is usual the doctors always ask about the scar on my stomach. I’ve had a scar on my stomach since I was 3 and a bit. It’s been there so long that unless someone draws my attention to it I don’t remember it’s there. Now that will probably seem strange as it’s a horrific looking thing all thanks to EDS.

 

If I wasn’t such a lard-arse at the moment I may have taken a photo to show you. The scar runs from around an inch above my belly button to the top my pubic bone. It has healed very wide around an inch or more at the worst places and the skin is paper thin. I also have no sensation / feeling at all in my stomach about 2 inches either side of the scar as the nerves were cut ( I have had multiple surgeries). It’s caused me problems in the past due to burns. A few times I have ended up seeking hospital treatment as I have given myself a serious burn injury and not noticed until the skin has gone black. Like I said I have no feeling there.

 

The scar has also tethered at the end near my pubic bone. This means the scar tissue has adhered to the muscle underneath. It causes me no pain but means my stomach is divided into two parts due to the tethering.

 

I showed the doctor on my abdomen where the pain was, she felt it and I had to be peeled off the ceiling. At this point she told me that she wanted to ring the surgical team at the local hospital for advice as she felt it could be my appendix or it could be an ovarian cyst torsion ( meaning the ovary was twisting because of the cyst). Personally I thought with both I’d be in more pain than I was. I declined the call to the surgical team basically because I hate the local hospital. If I had been in severe pain, vomiting etc obviously I would have gone, I’m not an idiot. But I knew what would happen, lots of tests, no sleep, idiot medical professionals and sent home after being made to feel like a time waster. At this point all I wanted was my bed.

 

I made the doctor a solemn promise that should the pain intensify overnight that I would ring 999 and if it was bad tomorrow (now today) I’d ring them. She wasn’t totally happy but she knew I wasn’t going to hospital. I have to add here that even in that severe amount of pain my blood pressure reached the dizzying heights of 115/80 with a pulse of 95, oxygen 98%. When my blood pressure is normal ( doesn’t happen very often these days) when in pain I am normally in the 130/90 territory. So that just goes to show you how low my blood pressure has been of late.

Its not desperately low but I am 5ft 8 tall and not petite. Most doctors take my blood pressure and you can see that they are looking forward to giving me a lecture about my weight and high blood pressure. You can see the disappointment in their eyes when it comes back low! If my blood pressure is below around 115/80 I can be hideously symptomatic, every time I stand up I feel faint. This week I have been drinking expresso’s as it’s the only thing that gives my blood pressure a boost, even if it is only temporarily.

Around 2.30pm the doctor I saw yesterday rang to check how I was. That was really kind of her but I feel guilty for making her worry. It wasn’t a quick call either, she had a huge list of questions to ask to ensure I wasn’t brushing her off and telling her what I thought she wanted to hear. This is why I love the small practice I use as they have the time to care about their patients, it doesn’t feel like a conveyor belt. If you need longer than your allotted time then you get it and none of the other patients mind as they also know they won’t be rushed out the door.

 

My plan is when feeling slightly better that I will make a doctors appointment and ask to have this pain investigated. Personally I wouldn’t be surprised if my ovary is stuck to my appendix due to all the adhesions I have.  

 

I’ve been so rough over the last week or so I haven’t done very much in the way of sewing. I tried some hand sewing yesterday but couldn’t concentrate so gave up. Today I finished a Travis bag for one of my Instagram friends. Thankfully that was a quick bit of sewing as I had started it well over a week ago. I can’t put a photo up as she hasn’t received it yet. Jamie will be sending it tomorrow for me. The lovely lady and I have chatted a few times on IG and she asked me if she could send me one of her bags and give her an honest critique of her work, which is a bloody brave thing to do. The bag would be mine to keep. I couldn’t let her just send me a bag, as I knew she had a dog I thought I would send her a Travis bag.

 

This is the bag she sent me,

 

I absolutely love this bag. The quilting is amazing, she’s also used variegated thread so it goes dark and light which emphasises the quilting beautifully. I only wish that I could quilt as accurately as this!

Down the rabbit hole

What I have been holding my breath waiting for since the start of the year and all the bereavements we went through has finally happened. I knew at some point my health would be impacted and over the last 7 days it’s happened.

 

I’ve spent a few days in bed this week, purely because the chest pain on moving and the level of exhaustion was becoming unbearable. I really hate it when my health takes a nosedive as it can be months before I get back to where I was before. The same thing happened last year when we went through two bereavements in the space of 6 months. It took me from the May until the October to get anywhere near where I had been before.

 

I hate the feeling of helplessness and vulnerability this creates within me. I lose all motivation to do anything and just want to hide away from the world in the hope it will leave me alone. But it wont and I have to be a grown up and deal with the things that make me feel uncomfortable.

 

I am fed up with the professionals in my life telling me that my body’s  and minds response to this is normal, personally I’d prefer that they waved a magic wand and made it all go away. However I know it’s not going to happen so I just need to put my big girls pants on and get through this.

 

I am trying desperately hard not to fall down the rabbit hole and get seriously depressed. I won’t lie I am dealing with depression and anxiety at the moment. I have lost my sewjo, I have just been too exhausted and when I have tried to sew I’ve ended up with horrendous double vision. Sewing to me since October has been like breathing so to not be able to currently do it is frustrating. Hopefully it ( my sewjo ) will return soon and I will physically be able to do it.

The Great Pretender

 

Sometimes when you are blogging you can feel like you are living a lie. There is a life  that I share with you through my blog and then there is the private life that I share with my nearest and dearest. Just recently I haven’t been sharing the whole truth with anyone.

 

As my regular readers will know Mr Myasthenia Kid and I have been through some pretty traumatic times of late. We lost one of our beloved dogs just before Christmas, then my Grandmother passed away, then my dear friend Pam passed away and then a school friend passed away. At the time it felt like I was just coming up to the surface to catch my breath and something else happened. There was no time to process anything at all. I knew that it was affecting me as there were days where all I would do was cry but I also knew it was having other effects on my mental health.

 

I have always been a really anxious person, I have spent years  in therapy learning how to do CBT. The problem this time was no matter how rationally and logically I could see what I was getting anxious about was ridiculous, I still ended up diving down the rabbit hole. I was waking from what little broken sleep I was getting in a state of absolute panic – usually clueless as to what had set it off. My anxiety was reaching proportions I had never experienced before. I felt constantly as if I was in flight or flight mode, all the time pretending to everyone around me I was ok. I didn’t see the point of bringing up my anxiety because I knew it was irrational and there was nothing for Mr Myasthenia Kid to fix. I just thought I would try to soldier on. At some point it had to get better right?

 

I tried bringing up my anxiety with my hospital consultant. I explained to him what had been going on and he responded “well it’s early days, give it a few more weeks and see how you feel”. The problem was he didn’t realise that if I am bothering to bring something up in an appointment it has got to the point where I can’t cope with whatever the issue is anymore. I don’t bring up all the different things that are wrong at every appointment, as we’d be there all day. I only bring up the most pertinent issues. If I am bringing up anxiety, it’s a big issue. Especially with my previous issues with mental health which are almost 20 years ago now.

 

Although the hospital consultant never meant for me to take it this way, I am sure, I felt like he told me to pull myself together and stop making a fuss. So I continued to solder on, with the trip to Birmingham only a week away I knew I had to hold it together. My anxiety was going crazy, I was barely sleeping but I just had to keep going because it would settle down, it would get better. The problem was it was just getting worse. I wasn’t sleeping and every waking hour was filled with fear over the slightest thing. I had permanent butterflies and I was close to tears constantly. Anything at all was making me burst into tears, which wasn’t me.

 

Last week it all came to a head. On Monday after my fall I kept bursting into tears. Initially I put it down to banging my head and the stress of the boiler not working. However as the days went on I was still crying at the drop of a hat. I had to face facts that things were not settling down, I was feeling worse than ever. Jay had noticed that I had become incredibly quiet and continually distracted (staring off into space), to the outside world it was still business as usual but even that was becoming hard to do. I am a great pretender but I was even beginning to struggle coping with the outside world. I had started to withdraw from my friends and just hadn’t bothered to message them as I just couldn’t cope with the thought of having to maintain a conversation and pretend that I was ok.

 

I managed to get the Duty Doctor to ring me as all appointments until after Easter had been booked. When the receptionist asked what was wrong and I replied anxiety and depression, she immediately put me on the duty doctors call list. I am eternally grateful that she didn’t think that I could wait for a standard appointment. I wasn’t at risk of doing anything stupid, I wasn’t feeling suicidal, I just felt like I couldn’t cope with everyday life. The doctor rang me back in a few hours and I explained what had been going on. She was so kind and understanding, she didn’t make me feel like I was overreacting and that I should be able to cope. She told me most people struggle with one bereavement to suffer so many in such a short amount of time would knock anyone. I was prescribed diazepam to use on the days when the anxiety was at its worst, when I just couldn’t calm down. To help me sleep she doubled my dose of mirtazapine.

 

I am slowly starting to feel a lot better, I seem to have had a break in the constant feeling of panic that I couldn’t stop before. I am still anxious but its at a more normal level. I am however exhausted constantly, my sleep is still hit and miss. Some nights I am out like a light but others I am still wide awake hours after taking my meds. I am also feeling very groggy the following morning and it’s taking me a bit of time to wake up. All of which I can live with if it continues to improve my level of anxiety as I don’t want to end up with the situation where the anxiety eventually causes me to become depressed.

 

So that you can appreciate how bad things had become I had got to the point where I had become frightened of using my sewing machine. Now anyone who reads this blog or knows me in real life knows that my life revolves around Jay aka Mr Myasthenia Kid, Mollie, Frankie and Sewing. I live to sew, when I am not sewing I am planning my next project. So for me to suddenly become frightened of my machine, was just bizarre. I can’t tell you exactly what it was that was frightening me but I just felt like a complete failure and that nothing I did was good enough…….a great pretender.

 

A few days after I had been on the meds I got my sewjo back. I decided to tackle my subscription box project which I hadn’t even had a proper look at since it had arrived at the start of March. It was really complicated but I just took it very slow and steady. This was the result

 

 

Dresden Plate design cushion cover in the newly launched Liberty Quilting weight range of fabrics.  I was so proud of it I posted it on the Sewing Quarter Fans page on Facebook.

 

Then on Sunday morning this happened

 

My Cushion was mentioned by Jenni Smith who works for Liberty of London on their fabrics. I was so chuffed, it has given me some confidence back again. So much so that I made another Dresden Plate cushion cover design on the Sunday.

 

 

So I am hoping that things just continue to improve now. I still get anxious, I always will but I no longer feel like I have to pretend that everything is ok. I (well we, me and Jay) have suffered a huge loss in a short amount of time and it’s ok not to be ok sometimes. You don’t have to pretend that everything is going well.

Constant state of panic part two

Well my friends on the forum have come up trumps again. I am not going nuts nor am I suffering with some sort of anxiety disorder. Apparently this is normal potsy stuff.

They believe (and as they actually live with this condition and my flare up coincides with hubs accident) that the accident has triggered my stress hormones that we potsy people don’t respond normally too. The hormones are the fight or flight ones and it seems I may have got myself into a vicious cycle, my body is refusing me to allow me to calm down by continually bathing my system in stress hormone.

Potsy people or people with autonomic nervous system dysfunction can produce too much of the hormone or none at all. They can also release the hormone at odd times or when the body no longer needs it as the threat has passed. Noradrenaline and adrenaline are the stress hormones I am talking about. Pots has a lot to do with the bodies responses to Noradrenaline. (the fight or flight response)

Its actually made me feel calmer knowing that I am not alone in this and I have the people on the forum I can go to if I need help. I didn’t think it was just anxiety as there is nothing that I can say yes that’s a trigger. Its very bizarre.

I can tackle this in two ways either chemically or try and resolve it naturally. I would like to not go down the medication route if possible and try and resolve it naturally. The best cure is for me to try and get as much sleep as possible and to try and do some meditation or yoga to send the calm down vibes to my brain.

Medication would involve a beta blocker which could leave me feeling worse as it could lower my already low blood pressure leaving me open to fainting spells.

So for now as I have been sleeping most of the day due to the sheer exhaustion of being on edge! I am choosing the sleep option! I have some meditation CD’S and I will make time to play these everyday to try and get on top of this.

Thanks for listening.

Constant State of Panic

I feel at present like I am in a constant state of panic / anxiety over everything or nothing. I don’t seem to know what is triggering it. I am a natural worrier but I have to be honest I am not really concerned about anything. However the signals from my body seem to be telling me different.

I know POTS can mess up your hormones so maybe its messing up the amount of adrenaline in my system? It is making me unsettled, anxious, shaky and my heart is just racing. Its not a panic attack as I am not convinced that I am going to die and I’m not hyperventilating. I just well its really hard to explain I feel constantly on edge.

I do naturally spiral things out of control in my head and go for the worst case scenario. With the car crash and dealing with the insurance company I convinced myself they wouldn’t pay out. I managed to talk myself around and realise this wasn’t the case. Yes that did trigger some anxiety, I now seem to have got myself into a pattern where I am becoming anxious over stupid things. Turning on the computer – why on earth be anxious about that? Getting the post? Having friends over? Am I anxious or am I just becoming aware of POTSY symptoms when I do these things? Its uncomfortable to live in a state of fear but having no idea why its happening.

Some days are better than others, today is not a good day.

I think I will post on the forum today and see what answers I get from my fellow potsy sufferers. Its driving me insane and wipes me of the very little energy I have.