Dembe

Those of you who have been following my blog for a while will know that sadly I lost, well we lost our beautiful Weimaraners 7 days apart at the end of last year beginning of this year. I let you know that we had also got ourselves a beautiful yellow Labrador ( he has a bit of fox red in him as well). I haven’t really spoken about him much here, not because he is some state secret but because mainly my blog has always been about the Weimaraners and because our lives have changed so completely with losing them and having Dembe.

 Mollie

 Frankie

Willow

Our lives have always revolved around our dogs and they always will. With the Weimaraners our lives were quite restricted, when left they would destroy our home ( chewing furniture, banisters, carpets basically anything they could get their teeth into) and sing to the neighbours. It meant if they were ever left we would have to pay for a dog sitter or beg friends to come and sit with them. They were fine as long as they had someone with them they just had awful separation anxiety when left alone. We could have taken the easy way out and given them up / rehomed them. If you ever look on websites for dogs you will always find Weimaraners on there 6 months to a year old who are being rehomed because they can’t be left alone without causing damage or noise. It breaks my heart. 

We decided as that as we had wanted them we would have to adjust our lives accordingly. It meant no going out together as one of us would have to stay home, ( they also destroyed the car if left in that with Willow eating the handbrake one day!). They dominated our lives for 15 years but although it may seem like a huge hardship they gave us so much love and so much companionship for me I never saw it as a hardship. We loved them dearly and due to that love we were prepared to put our lives effectively on hold for the time they were with us. Those years went past in the blink of an eye. The hardest part of those 15 years was some people just not understanding that our dogs would always come first and that we would miss events because of not being able to leave them. 

Now I am not slagging of the Weimaraners, a lot of their problems were caused by me and Jay. I fell ill 3 months after Frankie and Willow were born and due to the stress of me being ill and genuinely not being well enough their training was rubbish and so was their socialisation. They also got attacked several times when they were puppies by other dogs, so they became nervous aggressive. Walks became so stressful it was easier to walk them at 5am, which then became 4am which then became 3am. Jay would then be up for a few hours and then would go back to sleep getting up time would depend on whether he was working that day or not.  Evening walks would have to take place in dark on the common like the morning walks so that they wouldn’t bump into any other dogs. It was stressful, we were always worried about dog owners who had no control over their dogs who would let them get up in Frankies personal space despite us telling them he was nervous aggressive.

When Willow passed away in 2017 things got easier, mainly because there were only two dogs to control and the fact that she would whip the others up into a frenzy. We missed her greatly but it would be a lie to say that things didn’t get easier. Frankie no longer reacted to dogs out on the walk, he stayed well clear of them but you no longer had to worry that he would get aggressive due to his fear. Mollie was always really good with all dogs and we never had any problems with her. 

With Dembe it has been a clean slate, training started from the minute he arrived home and has been consistent. We don’t get dictated to by him when he goes out for a walk, where as the Weims would start crying and pacing due to being creatures of habit. For Dembe we have deliberately kept his walks unscheduled, so he doesn’t know and therefore doesn’t start acting up demanding a walk. He fits in with us not us with him. We don’t love him any less or any more than the Weims, we just decided that we wanted some of our life back.

The change in both of us has been immense. Jay used to suffer terribly with fatigue, we put it down to his methotrexate for his psoriasis and the stress of looking after me and the dogs. In reality now we know that it was night after night of broken sleep. Being awake for a few hours in the middle of the night from 3am until 5am then going back to sleep was destroying him. He never wanted to do anything or go anywhere because he was always so exhausted. Who can blame him he was dealing with extreme sleep deprivation. What I haven’t said is that when he was on an early shift ( quite often he would have had a late finish the night before so he wouldn’t have gone to sleep much before 11pm) he would get up at 3am and that would be him up until he went to bed that evening. 

Jay is now up every morning by 7am, 7.30am at the very latest. If he is on a late night we get to do stuff all together before he goes to work at 12pm.  We have a cup of tea and have a chat and then we will take Dembe out. Depending on how I am feeling or where we are going means that sometimes I can join the boys using my mobility scooter. Dembe is limited at the moment as to how much exercise he can have so that we protect his joints . Currently he can have 20 mins a day in just over a weeks time he can go up to 25 minutes as it is 5 minutes for every month of his age. 

Jay and I would be lost without him but we have really struggled to accept over the last 10 weeks that he is actually ours. That probably seems a really weird thing to say but I think because he came into our lives during one of the most traumatic periods we have lived through, although we loved him immediately there was almost this feeling that he didn’t belong to us. I would forget he was in the house with me and he would bark and I would jump out of my skin. His care was never, ever compromised it was just we were overwhelmed with grief and all this love we had for this little ball of fluff. 

He seemed so very little when we first got him home at 8 weeks, despite the fact his weight has increased by at least 10 kg and he has got so much bigger he still seems very dinky to us. After having three huge Weimaraners for over a decade I am guessing anything would seem tiny.  He is a very affectionate dog, he loves cuddles and kissing. He really loves Jamie and they have a little routine that when Jay gets into the car he looks into the back and Dembe smothers him in kisses. For me Dembe is my little shadow, I can’t go anywhere without being followed. He has also started to pick up on when I am unwell and adjusts his behaviour accordingly. We are not at the stage yet where he will happily lie on the bed with me all day but he will snuggle up next to me on the sofa. When I had a migraine Sunday afternoon and went to bed at 6pm he came up with me and settled down with his head over my feet. Just like Frankie used to. He also likes sleeping curled up on the top corner of my pillow. He gives me a little kiss goodnight when The Archers theme tune comes on at the end of the programme and settles for the night.

Without him Jay and I would have fallen apart. We have both really struggled mentally and physically over the last three months. I finally have started feeling more like my old self again but I am very quick to tears. Anything about Rainbow Bridge and I am gone. If anyone posts that their dog or cat etc has passed away I break my heart. The pain is still very raw but I am able to function in the world where as initially I felt so disconnected and as if I was trying to work on autopilot. 

I have neglected a few friendships because I have just been overwhelmed by the grief of it all. I know some people just wont understand at all how you could be so upset by an animals death. Believe me you can. I wish every night the last image in my head wasn’t Frankie passing away or seeing Mollie unable to walk or lift her head due to the catastrophic stroke she suffered. I had to stop watching this weeks episode of the walking dead when the heads on spikes mouths were moving despite them being dead. Frankie’s mouth muscles twitched for the whole time I lay on the floor with him after he passed away. It was too much and sent me straight back into flash backs of losing him. I was quite proud of myself being able to write all this without sobbing but I have fucked that up now.  I hope some day those horrific images stop waking me from sleep and stop being the last images in my head before I fall asleep because I do know happiness despite being so sad.

Without Dembe I wouldn’t be here, it is as simple as that. I could not have carried on under that weight of grief. I am not saying that to be melodramatic but for a few days there I wanted to die myself. My heart hurt and no one except Jay understood what I was going through. I have never seen Jay look as ill as he did during those 6 days that we had no dog in the house. When Dembe came home the colour came back into his face and it forced us to start living again. He is our miracle boy and our saviour. Even when he is being a wee shitebag.

If you would like to find out more about Dembe he has his own blog at http://www.thedembediaries.com 

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Medical arse covering

I know that this blog is called the Myasthenia Kid and yet of late I barely mention any Myasthenia like symptoms. Let me assure you I suffer almost every day with MG like symptoms. I think after my treatment at the hands of Doctors in 2009 and 2010, I just shut down. Those doctors who were the supposed experts did such psychological damage to me that I struggle even now ten years later to vocalise when the MG symptoms strike.

Currently the ptosis I suffer with ( daily to varying degrees) has been diagnosed as idiopathic hemifacial spasms ( and they ignore the fact that mestinon cures these “spasms” in around 20-30 minutes). The treatment suggested back in 2017 was Botox injections, funnily enough though no one has stepped up to do these injections, could that be because 1. I don’t have spasms my face is paralysed and 2. Botox and MG are contraindicated?

Its like the home oxygen supply I have,  apparently I don’t have any issues with my breathing well other than the suggested breath holding by the twat of a pulmanologist I saw ten years ago….. yet I have an oxygen cylinder and an oxygen concentrator. Do you see the running thread here at all? One might suggest there was a hell of a lot of ass covering going on here.

I have breathing problems on quite a regular basis. A lot of the time the shortness of breath can be alleviated with a booster dose of mestinon… you know the tablet that doesn’t work. On my very bad days I will use my oxygen concentrator. Tonight maybe one of those nights. I know why this is happening it is because I have been pushing myself so hard physically the last few days trying to get jobs completed. It’s the first time in around a year that I have done this much and as usual I have totally ignored the fact it will knock me on my ass.

Due to me having PoTs I take mestinon (also known as pyridostigmine bromide). It raises standing blood pressure, I can’t say that I have noticed any effect on my blood pressure but it really helps with the Ptosis and muscle strength which I lose as the day goes on. But obviously the muscle strength thing is all in my head and the ptosis resolving is the placebo effect. I just think it is another case of arse covering.

Some days when things are really bad the mestinon does nothing. It doesn’t help the breathing or the ptosis. Those days I stay in bed and pray that I don’t need the hospital. Years ago I told Jay no more trips to hospital unless I was unconscious or I asked specifically asked. I don’t do hospitals anymore because I always get treated like I am a time waster who “thinks” I have Myasthenia Gravis. 

Even though I have multiple conditions now diagnosed, some doctors still ignore all that – even with the positive test results and jump straight onto the fact that I was diagnosed by a neurologist with somatiform disorder – notice I say a neurologist. Which is a bit like asking a cardiologist to do spinal surgery.  They also like to bring up my mini breakdown in 1999 – yes 20 years ago and use that as a reason why I am unwell. Despite the fact I went many years without any depression due to the hard work I put in through two years of counselling and CBT.

Yes at the moment I am suffering with depression and anxiety which I would consider perfectly normal considering the losses I have dealt with in the last two years. I have lost 4 friends, my grandmother and my three dogs. Obviously Frankie and Mollie passing within 7 days of each other really knocked me back. I ended up speaking to a doctor last week – more on that in a second, and had my antidepressant dose raised and was given some diazepam for when I can’t get out of the panic cycle. Thankfully since the antidepressants have been increased and I have the diazepam I have been feeling quite a bit better. It’s just as well as I have to be honest I really wasn’t coping, I was doing a great job of masking it and some people can’t get their heads around high functioning depression. Believe me I can keep going even when I feel dead inside. It takes a lot for me to finally crumble. And last week it finally happened.

Anyway a slight diversion just for a laugh, I am on the phone breaking my heart to this doctor, saying about the panic attacks, the anxiety, the grief and the depression. I kid you not I was asked if I had considered taking Kalms (  see what they are here ) and then the piece de resistance had I tried rescue remedy (here ) if I hadn’t been breaking my heart I would have launched at her. What the hell was she doing ??? look at the medications I am on does she not think that I am way past some fucking Kalms and 3 drops of rescue remedy? I couldn’t get off the phone quick enough, despite that she still managed to bang on about using meditation. I pointed out it doesn’t work for me and leaves me feeling worse.

I do a guided meditation when I can’t sleep and my mind goes nuts with useless information flying through it. It makes me seriously worry that if someone was suicidal this berk would have offered them St Johns Wort and wondered why they hung themselves. Obviously the last sentence isn’t funny its a genuine concern, when depression isn’t taken seriously and the problem here was a locum gp who wasn’t aware of my magnificent mental health history, they may try to fob someone off with mindfulness. Mindfulness is fine when people feel a bit down or stressed but it won’t treat someone who is very / severely depressed. Same as rescue remedy will not treat Generalised anxiety disorder or OCD. It is only because I can and do speak up for myself that I got what I needed, increased meds and some extra meds. I knew I just needed a bit of breathing space to put myself back together. Had I not forced the issue, well I don’t want to think about it really because I was teetering on the edge of becoming seriously unwell.

Anyway I digress, don’t I always. The way I have been treated by the medical profession especially any time that Myasthenia Gravis is raised has left me with a fear of doctors and a phobia of hospitals. I have spoken to so many other people with chronic illnesses who say the same. We stop going to the doctor because we know we will be fobbed off.

Take the doctor in July who told me the pain in my neck and the numbness in my arm was stress. In December I went back, because I was now losing my grip and the numbness was worse and I am told I have an impinged nerve, I need physio but the doctor believes I will probably need surgery to decompress the nerve. Thankfully I have avoided that by paying to see my private Physio. Someone who works with me and lets me know that she understands I know my limitations and she can’t push me.

So no the MG symptoms haven’t disappeared I doubt they ever will. They will just be a host of additional symptoms that no one is prepared to say without a positive SFEMG or blood test what it is and lots of medical arse covering will take place.

Me on Monday afternoon. Does this look like a spasm to you or paralysis? As you can see both eyes are trying to close. My right pupil has drifted to the side of my eye socket. The left eye is desperately trying to stay open by pulling the eyebrow up but as you can see the eyelid is trying to close. The fuckwittery I have to deal with is outstanding!

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.

 

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.

My first Quilt

It’s just going to be a little blog post this week as all of a sudden I have started to struggle with the heat. It is again ( as it was like this in the same week last year) much hotter than it would normally be in the UK for the time of year. The last few days I have been struggling with muscle weakness. One day I found myself unable to chew – must be my idiopathic hemifacial spasm playing up…. ***sarcasm*** because it went with an additional dose of mestinon. Obviously the placebo effect ….**sarcasm**

 

Around the middle of May I posted about my trip to the dentist and the fabric shop, where I chose the fabric I was going to use for my first ever proper quilt. Not a quilt as you go where the blocks are all laid out for you but an actual proper quilt. I had seen a quilt design I liked called “Floating Triangles” in a magazine called Simply Sewing designed by Janet Goddard. I loved the minimalist look of it and thought I’d love to make something like that.

 

So that was it, on a whim the fabric was bought and then it sat on my shelf in the kitchen until June 2nd, when I decided to start cutting it out.

 

 

 

A few days later I started to make the half square triangles (48 in total). I must be strange as I enjoy all aspects of sewing, it’s the cutting out I find hard but that’s been made a lot easier with my new creative grids stripology rulers. However for all the squares I had to cut out I couldn’t use my new rulers as they needed to measure 4 ⅞ inches. Typical! So I ended up making a cardboard template. I am useless at drawing straight lines, I really need to buy myself a set square to help in situations like this. I have already invested in a compass for the centre of my Dresden Plate designs!

 

 

The following day I started adding the strips to my half square triangles. Unfortunately I was a little over eager on my trimming of my half square triangles and found that I had to remake a load of half square triangles as they were so much smaller than the others and it would have made the rows wonky. I think in total as further down the line I had to make some more blocks I probably had to remake 10-15. Its annoying but I have kept them all as I will sew them together to make a bag, as I love the fabrics I chose for the quilt. I also had to buy more backing material due to my many cock ups with measuring. Thankfully with the new rulers those should be less!

 

Oh I forgot to tell you about my EPIC mistake of accidentally having two rotary cutting blades on my cutter. How did that happen? Well I bought some expensive blades and they were all covered in oil. I am guessing when I replaced a dull blade I didn’t check properly that it was just one blade. So it cut all my material as if a hoard of hungry mice had been chewing the side of it. Thankfully most of that could be hidden in the seam allowance. I am telling you this because some people seem to think everything I do is perfect and I never make a mistake. Of course I do! If I didn’t make any mistakes I’d never learn anything. I want you to know mistakes are ok, even if I am known on Instagram now to some people as “Two Blades Rach”. It’s quite funny really!

 

 

Once I had made all my blocks I sat down and worked out the plan of my triangles. It was important that I did this so I knew how my rows would go together. I also wanted to place certain fabrics together so they had a bigger impact rather than drowning each other out. I did a full size quilt plan and then I broke that quilt plan down into two.

 

 

 

Once my blocks were made I then put them away in a box and cracked on with a lot of makes for other people, birthday presents, thank you gifts and of course fathers day. I made Jay an Owl soft toy for father’s day which you can see on last week’s blog post. I also made him this lavender pillow

 

Front

 

Completed lavender pillow

 

Tula Pink Fabric back of pillow

I kept putting off making my quilt as I was terrified all the blocks would be all the wrong size and it would be a disaster. It is quite common for me to ignore a project for a bit if I am feeling anxious about it. I also have to be in the mood to sew certain things. I have to be in the mood to make clothes – I find it boring and hard work because I have such a skills gap. I have to be in the mood to quilt as it takes a long time and you can be doing the same thing over and over. It also involves a lot of pressing which in this heat you really don’t want to be doing. It wasn’t until I started making quilts that I learned there was an actual difference between ironing something and pressing something.

 

Last Friday I decided to bite the bullet and put this quilt together. I really hate having WIP’s ( work in progress) hanging around and I don’t do UFO’s (unfinished objects). I have a small house so projects need to be completed and gone rather than hanging around collecting dust! I checked all the sizes of the blocks and as I said earlier realised that some weren’t good enough and needed to be done again. So that added more time onto getting the quilt completed. For me it seems like it’s taken an absolute age to get done but Jay assure me to him it feels like he went to work one day and came back to a completed quilt!

 

 

I only managed to sew the rows together that day, as a lot of planning had gone into each row. Checking against my quilt plan I put all the rows in order using post it notes on each – with the fabric order on also, so that the chances of me making a mistake were minimal. I have made mistakes before with my quilt as you go quilts, where I have decided on an order that the blocks would go in. Taken photographs, only to realise once its all been sewn together…………..3 blocks have been sewn upside down totally ruining the pattern I had wanted to create. At the point of discovery of my mistake it was too late, I had sashed and bound it by then. Lesson learned, this time I over planned!

 

On the Saturday I started to sew my rows together.

 

As it was only 8 rows it went together very quickly, however disaster struck on the 8th and final row when I realised I had sewn the blocks together in the wrong order. Out came my trusty seam ripper and the blocks were then sewn in the correct order. I am so glad I managed to catch that mistake before continuing as it would have stuck out like a sore thumb otherwise the final row would have been completely different to all the other. If I am honest there was a lot of unpicking as the rows were sewn together as I managed to sew triangles together in the wrong position etc. I never let this wind me up though, I’d rather find a mistake at this point than like the quilt as you go first quilt I made.

 

I then cut ( using my stripology ruler) my borders for the quilt and sewed those on. At this point I was just totally in awe of what I had created. My first ever quilt top was sewn together. This was a huge moment for me! I then decided **ck it and decided I would baste my quilt. Basting is basically putting on your wadding and backing fabric, to the quilt top. As I didn’t have much room I did it in two halves not ideal but there was nowhere with enough floor space for me to work. I did it using the ironing board, it wasn’t perfect but it was done. I used a temporary glue spray and safety pins around the edges to ensure it was secure.

 

Sunday was the day I decided to quilt my quilt, that sounds bizarre but a quilt isn’t a quilt until you have sewn all three layers together. This quilt had a very basic pattern just straight line stitches that went through every second row of triangles. I managed to get some floor space in the lounge whilst everyone else was asleep and I marked out the quilting lines with a fabric marker and my huge ruler ( another creative grids one). Thankfully I had set my machine up the day before, so my extension table was on ( I discovered a neat trick as my extension table can move a little, especially when I bash the edge of it by accident, so I used masking tape to keep it in place just taping from one edge of the table to the other sticking it on the bottom of the throat space of my machine – avoiding the needle plate. I only used two strips of tape). I had also ensured that I had rested as much as possible, as I wont sew when I am tired. I started quilting on Sunday afternoon whilst Jay watched the England match. I was finished just after half time. I forgot to say I used my walking foot. I had to unpick a couple of little bits due to puckers and re sew them but its the neatest quilt back I have ever sewn.

 

 

Yesterday (Monday) I decided I would make my scrappy binding and then attach it to my quilt. I machine sewed the front of the binding in place using a tutorial from Lucy Brennans https://www.charmaboutyou.com/ blog. It went on very easily and then I had the afternoon to slow sew the binding onto the back. I finished late yesterday afternoon ( lots of frequent breaks as I have been really struggling with double vision the last few days so that makes threading a needle an absolute nightmare).

 

 

I had made a label for my quilt on Sunday evening but my eyes were so bad by the time I had finished sewing the binding on that I had to stop. I sewed my label on this morning at around 7am as I had been up for an hour or so by then.

 

 

Once the quilt label was on it was time to give it a wash to get rid of the temporary glue and the fabric marker from the quilt lines.

 

 

I am so pleased with this quilt I am still in shock that I made this!

 

And obviously I lied when I said it was going to be a little post, hubby brought our huge fan down from the loft this morning and put in the lounge for me. What a difference that’s made for me and the dogs!