Consequences

I went out on Sunday with friends…. I know that sentence seems bizarre. It is something I haven’t done in 12 years. On the surface it may appear to some that to attempt such a thing must mean that I am doing better. I mean I left the house and socialised for 6 hours. What they didn’t see was the fact there were days of pacing so activity followed by rest periods. Massive amounts of ensuring I got my medications scheduled at the right time and attempting not to let my anxiety take over.

We planned going to the create and craft show back in July. As the ticket only cost £8, I was prepared to lose it if on the day I woke up and wasn’t well enough to attend. It seemed so far off in the future the 29th September that it may as well been a year away. So when I realised it was the coming weekend it set me into a panic. My biggest fear was becoming ill away from home and then ruining the day for my friends.

The anxiety leading up to this event was off the chart. I lost a few nights sleep over it. I kept catastrophizing, what if’s? The stupid thing is many of these what if’s have never happened. It was a fear of the unknown, of never having been to a Create and Craft show or knowing how busy it would be.  Surprisingly the morning of the show the anxiety had subsided and I was able to look ahead to the day. I was almost relaxed which then made me anxious.

I had more medication on me than a pharmacy to cover me for every eventuality.  I had my 4 hourly meds – pyridostigmine and pseudoephedrine to ensure that my blood pressure remained high enough for me to remain vertical and not suffer horrendous fatigue. Extra pain relief in case sitting on my scooter for all that time caused muscle spasms or just pain. Stugeron in case my vertigo decided to kick off and cause me problems. Taken at the earliest opportunity it can stop an attack in its tracks. Buscopan, in case due to nerves my bowel adhesion pain decided to pop up and make itself known. Paracetamol – to give me extra back up for my pain relief. I decanted oramorph ( liquid morphine) into a smaller bottle so I didn’t have to carry a huge one with me. Alarms were set on my phone, compression socks on, allergy lists, medication lists and medical condition lists were safely stowed in my bag. Along with a list of my doctors and next of kin. All this and I was only leaving the house for a few hours. If that all sounds like someone who is doing better let me know.

Every trick in my book was employed to ensure that I would be able to cope with this trip out ( as a one off ). Everything that could be done in advance of Sunday was done. Clothes for the day sorted by Wednesday, down to underwear and compression stockings. All clothes had to be comfortable, in layers so that I could be warm or cooler depending on how my temperature decided to behave on the day. Normally I am always cold. All medicines, allergy lists, medical info was printed out weeks in advance and kept in an envelope so on the day ( or day before ) it could just be slipped into my bag. My bag was packed on Friday and Saturday, last minute items Chilly bottles of drinks were added on Sunday morning. Nothing was left to chance. Every eventuality was planned for. Jay would be staying at home with Dembe and would be ready to come and get me should I need collecting early.

The day itself was fantastic, I managed to chat to lots of people. I met the ladies behind the scrap-busting quilt challenge from Sugar Bowl Crafts and bought half a metre of material from then, some Anna Maria Horner fabric. I chatted at length to the local branch of the Embroidery Guild and would have signed up to attend meetings had they not taken place on a Saturday. Not driving and having hubby work in retail meaning Saturdays off are like gold dust means I miss out on a lot of things. I also spent a great deal of time talking to the Quilters Guild  region 4 which is my region. I am now considering entering a quilt into the novice category of The Festival of Quilts as 2020 is the last year I would be able to enter this category. You have to have been sewing less than 3 years, I started October 7th 2017.

I could have spent an absolute fortune on fabric. There were just so many beautiful fabrics from so many different designers. I managed to pick myself up some bargains. I got some gorgeous fat quarters, some Christmas and some non Christmas.

 

I managed to pick up some good quality thread for £1 a reel. The pinky one is for me to finish a cushion cover as I didn’t have any threads that were even close to the colour of the fabric. The blue thread is for my Christmas table runners. As I tried applique on my embroidery machine last week for the first time, I absolutely loved it.

Yesterday I found out my snowmen are going to be the Brother Embroidery machine group that I belong to banner for the month. Which was a wonderful surprise.

A lot of my Christmas fabric was bought to make Snowmen and Father Christmas table runners as gifts. So I went in with a set list and didn’t deviate from my plan. It would have been incredibly easy to go mad but I have so much fabric that I need to only buy what I need, not what I want! Or I will have to make another scrap-busting quilt very soon!

By the time we had finished at the show I was getting cold and exhausted. I was in bed by 6.15pm as I could no longer hold myself upright and had already suffered a bad fall in the kitchen about a hour earlier caused by being over tired. I was asleep before 8pm and slept all the way through waking at around 6.30am. By 7am I had badly scalded myself with steam from the kettle so Monday was effectively written off as I spent the day on the sofa with my hand in a bowl of cold water.

Yesterday was pretty quiet too although I did manage to stitch out a cushion front for a friend. Only because hubby was home and I didn’t have to do anything other than look after myself. I managed to forget to take my blood pressure boosting medications so by 4pm I was wondering if I would make it to dog training. I took my medication and had two cups of coffee and that saw me through. However this morning…Wednesday all the activity has caught up with me and I feel hungover, the concentration span of a gnat and every part of my body hurts.

I knew that I wouldn’t get away with going out unscathed, I am a little surprised that it has taken over 48 hours to hit me properly. Normally it is 24 hours before I feel an outings / events full effects. But this was a huge deal and I had probably kept myself going with the adrenaline still firing and the fact Monday I couldn’t do anything and I was still limited yesterday. There are always consequences, I will always end up paying for enjoying myself. I can’t complain it is far worse not to have done anything and still wake up feeling like you have been run over by a truck. I might not look that sick but looks are very deceiving. Only people who really know me, know how I look when I am taking a nosedive. This morning I only had to catch sight of myself in the mirror to know that this was the day I would be paying for trying to be normal.

So it was a huge deal for me going out on Sunday, it wont be a regular thing as I don’t want to spend days recovering no matter how much I enjoy myself. This is now recovery day three and this is the most multisystemic one. Today my blood pressure is misbehaving, I am white as a sheet and my pain is at a higher level than the norm. I would love nothing more than to announce that my health has made such a significant improval that a trip out with friends had no consequences for me but sadly that just isn’t the case.

Massive thank you to Alison and Tracey for looking after me. Also Chris for driving us.

Ophthalmology

I wrote a while ago about a rather upsetting visit to the gp’s surgery, which you can read about here. I haven’t updated you all since through my blog, if you follow me on The Myasthenia Kid Facebook page then you will know about this. So I apologise for going over old ground in the next few paragraphs but after that it’s all new, I promise.

So to provide you with some context back in July I saw a trainee gp or as I like to call them a 12 year old with attitude. They were terribly dismissive of my dry eyes, they looked at the Clinical Commissioning Groups dry eye pathway – so what drugs they are “allowed” to prescribe. They tried to palm me off with stuff that came under mild dry eyes and this was after I had the first corneal abrasion. So I had to point out that a corneal abrasion didn’t suggest a mild dry eye problem. So I was given more day time drops but no help at all for the night time ointment that I am allergic to. I got a shoulder shrug and was shoved out the door. Just a quick update though finally after waiting since July I now have an appointment for the Ultrasound that they were supposed to request……for the 10th October! Glad it is nothing serious eh?

So fast forward and blog readers only, this is where you will find out that exactly 4 weeks after the first corneal abrasion, I got another one. So I made a doctors appointment for the 27th August. I attended the appointment filled with hope as this would be with my gp, who had more experience and didn’t feel like they had anything to prove. Unfortunately that was not the case. I explained to the gp that I had suffered 2 corneal abrasions in the last 4 weeks, that I am allergic to three brands of the night time ointment that I had tried . I attempted to show them these photos to show how bad the reaction was but I was told quite firmly “I believe you”

It soon became clear though that they really didn’t believe me. They asked if I was allergic to Lacrilube which I told them I had used it in the past with no issues, however there is a national shortage of it in the UK, I was using the NHS suggested replacement and I was allergic to that. They then decided, despite the computer flashing up that there was a national shortage of this drug when they tried to prescribe it to ring the local pharmacy to see if they had it stock. I could hardly contain myself when I heard the pharmacist tell them loud and clear there is a national shortage of the medication. They then proceeded to tell me that she would prescribe me more of the ointment I was allergic too and if I didn’t want to use that perhaps I could get up 3 to 4 times a night to put my day time drops in.

I will admit to getting rather cross at this point and asked at what point would they consider repeated corneal abrasions serious enough for me to be referred to the Ophthalmologist? I pointed out that I have a connective tissue disorder Ehlers Danlos Syndrome and that eyes are made of collagen. I challenged them to explain why putting my sight at risk was acceptable as due to having EDS I was at risk of scarring. I was really angry, so angry I would have cried if I could produce the tears. My voice was shaking. They then said “you seem angry”. What is this naming feelings shit? It doesn’t make me calmer it makes me more angry, I am not a child who can’t identify what I am feeling. I got crosser and replied “Yes I am angry. I am angry that after two corneal abrasions and two gp appointments I am still being fobbed off.” They interrupted and said “I am not fobbing you off but the Ophthalmology department won’t see you whilst you are taking morphine as that will dry your eyes out.” I pointed out that I was diagnosed with dry eyes at least 5 years before I started taking morphine and I found it highly unlikely that morphine would now suddenly be making my eyes much drier than they had been for the last 14 or so years. 

To cut a long story short I had to demand to be referred to an ophthalmologist as they had tried all the eye medications open to them as a gp and now I needed a specialists in put. To pacify me I am sure she told me she would speak to the ophthalmologists and see if they would accept a referral. The attitude of this doctor to essentially prevent me from seeing a specialist when it was clear that my eyes were severely dry and causing corneal abrasions because my eyelids are sticking to my eyeballs overnight really upset me. Like I said earlier if I could have cried I would have done. I am so sick of everything being a battle and I am seriously worried for patients if they have conditions that need a consultants input that referrals are being barred for no other reason than financial. That is wrong on so many levels and against the hippocratic oath.

Funnily enough less than a week later I got a letter through to book an appointment with the Eye Hospital. Look at that, they did want to see me, even if I was on medication that could make the dry eyes worse. The fact that my letter came through so quickly made me even angrier because it was even clearer that this was about finances not what was best for the patient.

So today ( Tuesday 24th ) I went to the eye hospital. I attended by myself on my mobility scooter as on the letter it stated I could be there up to three hours doing tests before I got to see a consultant / registrar. That was way too long to expect Dembe to work as he is only 10 months and I won’t put him in situations that would be too much for him for fear of putting him off due to bad experiences. So Jay dropped me off and headed back home. 

As usual whomever designs hospital waiting rooms seemed to have failed to grasp that some patients will need mobility aids such as frames, rollators, wheelchairs and scooters. The chairs were crammed together with no space for anyone using a wheelchair or scooter to get themselves into and out of that area safely. This total lack of awareness in a fucking hospital of all places really grinds my gears. This place should be the gold fucking standard of accessibility as surely the disabled are the ones who are going to be using this resource more than the rest of the population. Come on people its 2019 and we are still treating the disabled as an inconvenience or invisible.

I digress. I managed to find a spot for me to occupy that wouldn’t cause an obstruction. I was worried as many people attending the clinic are legally blind, so I checked with the nursing staff that I was ok. I had a quick vision test reading letters off a board  and then I was back in the waiting room. I would be called into consulting room 7, 8 or 9. I was called in reasonably quickly by a young lady doctor. She was exceptionally polite and courteous. I won’t lie I was terrified all of yesterday and this morning that they were going to treat me like a time waster and tell me I would have to come off morphine before they would treat me. After all this is more or less what the gp had suggested. This couldn’t have been any further from the truth.

The doctor was very concerned to learn that I have been suffering from minor corneal abrasions for a year before having the two within 4 weeks. Fingers crossed I have managed to avoid one since 10th August – I know I have probably just jinxed myself. She asked me what ointments I had tried at night to lubricate my eyes and attempt to prevent the abrasions. So I brought out the three tubes. I then said I am allergic to all three, so she asked me to tell her the symptoms. Thankfully in the waiting room I had the presence of mind to screenshot my photos from August so they were the first photos on my phone and I didn’t have to spend an age scrolling – I take a lot of photos. She was quite shocked at the level of swelling. I let her know it isn’t just swelling but the skin burns and itches. She said to me that I shouldn’t use the ointments with that level of reaction to them. Which left me wondering why my gp had issued me with another prescription for one of them? Had they bothered to look at my photos maybe they would have accepted how bad the reaction was. How I have got away with no abrasions since August I have no idea as at best I have probably used the ointments 2 to 3 times a week. As the swelling is crazy after one application and takes a couple of days to go down.

We then went through my day time routine with my eyes and the medications being used, plus my symptoms. I am pretty sure that the gp had stated that I had watery eyes due to dry eyes, which as weird as that sounds is a symptom that some people have with the condition. I never have. I used to have eyes that watered every time I yawned but they don’t even do that anymore. The consultant seemed genuinely surprised when I said no my eyes don’t water and she rechecked the letter she had in front of her. She was very pleased that I had taken matters into my own hands and tried different drops as it moves the situation forward ( I brought all my eye medications I use or have tried with me). She told me if I hadn’t of done this she would now have to try me on various medications to see if they worked. As this had already been done she could go straight to prescribing Ciclosporin eye drops. 

The Ciclosporin eye drops are to used instead of the night time eye ointment. She has warned me they will sting badly when applied and probably make my eyes water. If I can stick with it around 80% of people who are placed on them find they work for them. They will take 3 months to reach full effect. However she wants me back in clinic in 6 weeks as by then I should know if they are helping at all. At that clinic appointment depending on how they are working they may add steroid drops into the mix . She let me know if the Ciclosporin drops don’t work we haven’t reached the end of the of the road and there are still other things to try.

I also had a thorough eye examination. My retinas were checked, the surface of my eye was checked – I had the lovely yellow dye put in them. She flicked my eyelids up on themselves – that made me feel sick and she did it without any warning! She also prodded the bottom lid with a cotton wool bud ( Q tip ) looking at the tear production glands. She told me I have two issues. Firstly I have very dry eyes probably caused by a combination of factors my hormones – the delight of the menopause can make dry eyes worse, my medications – I dispute this as these medications I have been on for years and the dry eyes only took a turn for the worse 12 months ago. However I can’t be bothered to argue as they are treating me seriously and not fobbing me off. Thirdly your autonomic nervous system also controls your mucous membranes so it would make sense with mine being so naughty that it has a hand in this. I made it clear that I wasn’t concerned with what was causing the dryness more the fact I wanted the corneal abrasions limited if not stopped.

After the appointment I was absolutely fucked. I hadn’t realised how very stressed I was due to the gp making out that I was wasting everyone’s time. I was worried about the information the referral letter would contain . The doctor I saw today was really pleasant and thorough. I felt listened to and validated in my demands to be referred to the hospital. Ciclosporin can only be prescribed by a consultant and will mean ( if I can tolerate it) that I will need to attend the eye clinic every 6 months. However after two corneal abrasions it should never have needed me getting so angry to push the gp to do this. Especially when they weren’t offering me any way to limit or prevent the corneal abrasions. I do worry for other patients all over the UK who have real issues that need consultant level intervention who are being denied access to them. I thank god that I stood my ground and got my referral.

Just for a few giggles – I went through the entire hospital and hospital grounds on my mobility scooter completely unaware that my face was stained with the yellow dye they had used on my eyes. No wonder I was getting a few strange looks!

It was worse than this, it was only because I had wiped my eyes I realised!

Truth v Gossip

There is one thing that I have found since having several chronic health conditions that people simply do not understand and that is the fatigue levels that come with them. I know some people have created this fairy tale in their heads that either have withdrawn from society or that Mr Myasthenia Kid doesn’t let me out in the world. People stupidly believe this gossip rather than actually ask me. They are simply untrue, the reason I don’t go out very much is because I get so exhausted by doing very little outside the home.

At home I have an environment I can control. I have regular household sounds, lighting etc. All of which my body is used to. The minute any of that becomes too much I can go to bed, lie down, limit the light and sound. Out of the home I have zero control over the additional stimuli my body is bombarded with. Also these days I am using a scooter a lot of the time, the concentration levels involved in driving this even for a short period of 20 minutes, drains me. It makes it hard for me to manage a conversation and drive. The minute I don’t concentrate like when driving a car accidents can happen. I have almost gone off the sea wall down at the seafront because I was trying to talk and drive. It takes a lot out of me and unless you have to balance your activity and rest periods people just don’t understand it.

Since Sunday I have had an extraordinarily busy week, for me. For normal people this will probably sound like a leisurely few days. On Sunday we went to Pets at Home the big one so around 20 minutes in the car to get there. Then we went to Tesco to upgrade our phones which took about an hour. We had Dembe with us who behaved beautifully. There were lots of people in Tesco that I knew that haven’t seen me since I have lost 49lbs in weight and who also wanted to meet Dembe. So it was very busy. After the morning we had around 90 minutes sit down and then we went to visit friends with Dembe. It was lovely to see them both and Dembe really enjoyed his visit too. However by 6pm I was completely drained and was up in bed resting, before dropping off just after 8pm.

Many of you will be thinking how can that low level of activity wear you out? I wish I knew, my only explanation is the assault on all my senses just physically and mentally wears me out. The extra noise, people, lights, smells, physical activity of driving a mobility scooter. Being upright with my legs down and blood pooling, changes in temperature, all those things combined just zap any charge that was left in my batteries. On Monday it took me hours to get moving. I was fit for nothing until about 2pm, which is crazy. My body just felt like there were 15lb weights attached to each limb and my head, well I just couldn’t really focus on anything that demanded more than a limited amount of mental acuity. 

On Tuesday I felt a lot better as I had spend Monday recuperating, which again if you have never suffered from bone crushing levels of fatigue you would struggle to understand. We needed to take Dembe to the vets to be weighed and to get his worming tablets / flea / tick treatment. We were there around 20 minutes as we like to have a catch up with the staff as Dembe is very popular there. We then popped up to Tesco for a few items, we took Dembe with us to give him some more environmentalization training. We only needed three things but Dembe has such a huge fan club amongst the staff and customers that it took 40 minutes. I then spent as much of the afternoon as I could resting with my feet up as in the evening we had our first night back at our weekly dog training class.

Evenings are the absolute worst time for me to be out of the house. Purely because I go to bed every evening between 7pm – 8pm or earlier if it is a rubbish day. By then I struggle to hold myself upright, co-ordinate my movements and as I discovered last night I can also end up struggling to talk because my brain can’t channel the words to my mouth. Ending up with me looking like a fish out of water. I thought I would be ok, after all I did the dog training in the summer. But I don’t think I had been out as much during the day. The dog training lessons are intense. Even though I just sit there and let Jay do all the training. I can’t do the walking around or being up on my feet that much. 

I coped ok in June and July so it was really surprising ( and frustrating ) to me last night to get half an hour in and to start feeling really, really unwell. I don’t know about anyone else but I hate having to ask for help or potentially making a scene due to being ill. I have in the past been known to wait for everyone to leave the room before I have allowed myself to projectile vomit. Thankfully there was nothing for anyone to see, although I may have gone more pale than normal. I just suddenly had the internal organ sinking feeling, then felt I experienced some feelings of dissociation. I knew I was in the room but I didn’t feel I was part of it. Unless you have felt this it is a difficult feeling to explain. I can feel like this just before I faint and I knew that is what my body was preparing to do. As I was sat down I rapidly starting clenching my bum cheek and tensing my calves in an attempt to get the blood moving. The whole time I was absolutely terrified I was going to wake up surrounded by people having taken a nosedive from the chair.

The weird thing was I could see poor Dembe trying to alert Jay to what was happening as hit lay down on the floor and had his head turned to me. He was watching ensuring I was ok. When I spoke to Jay afterwards to let him know what had happened he said “why didn’t you get up and go to the car so you could lie down?” which is a reasonable enough question as normally I do have quite a bit of warning so I can avert a faint. I just said to him that I felt so bad I was terrified if I stood up that I would go down with a bang. He then said “well why didn’t you shout me?” the simple fact of the matter was I just didn’t want to do anything that would draw attention to me.

 I really HATE the spotlight being on me, I hate it even more if it is because I am having a funny turn or have fainted. It is stupid I know but I just can’t, it makes me feel so very uncomfortable. Like I am causing a nuisance or being melodramatic. This probably goes back to various incidents at school and at work where I have been seriously unwell and been called a drama queen or that I was causing a scene. When I was younger I was never believed when I was sick, even when I have had major surgery, I had work colleagues say I was doing it for attention. How on earth you get a team of NHS surgeons to open you up from pubic bone to sternum just for fun I have no idea but apparently I can.

Thankfully my funny turn went after 10 minutes but it left me feeling seriously drained. I spent the entire journey home yawning non stop which is always a sign that my blood pressure has dropped. I was in bed by 8pm and asleep by 9pm.

Today ( Wednesday ) I am seriously pooped but like I always say I’d rather be knackered due to going out and having fun or just living a normal life than being this wiped out from doing nothing. Again it has taken me all morning to get going. I have been up since 7am and it is only now at 13.30 that I am starting to feel human and that I can do anything that needs any mental clarity. On days like this I have to take advantage of any window of opportunity when I feel well enough physically and mentally to be able to get up and crack on with something I want to do.

Obviously having the Weimaraners did curtail my activities outside the house. It was too expensive to get dog sitters in all the time and there are only so many times you can ask friends to do it for you. They were too destructive to leave by themselves, so in the end it just became easier to not go out or just one of us go, than stress out about finding someone to stay with them. Our friends have been fabulous, Imogen looked after them so much in 2015 when I had my CSF leak. If it hadn’t been for her I wouldn’t have been able to attend half the appointments I did. She also looked after them when we went to the Emma Bridgewater factory for the day which was a 14 hour (plus) stint . My friend Sharon also did us a massive favour when she stayed with them so that Jay could appear on Sewing Quarter TV. Both Ellie and Heather have stepped up too and looked after them, along with Tracey, Sarah and so many others over the years. But even with that massive pool of helpers it wasn’t fair to continually ask them to look after them. So our outside activities took a back seat, plus a lot of the time I just wasn’t well enough.

Now we have Dembe and we are training him to be my assistance dog it means the whole world has opened up to me again. It is really weird after having 12 years of not really going anywhere but the hospital, the doctors surgery or the dentist. Those visits also wiped me out. We are so used to being home we are having to force ourselves to go out. Which is another reason why we are doing all the training with Dembe as it means at least once a week I will leave the house and also that he will be a well behaved assistance dog whom we can take everywhere with us. But I will always have to pace my activities. I will never be well enough to go out all day, every day of the week. I just don’t have the stamina or physical reserves to be able to cope with that. And that is fine with me. I do quite like my own company and being able to do the things I want to do. I guess I am saying I like a balance.

So when someone tells you that someone is a recluse or that they aren’t allowed to go out. Have a good long think about that person’s circumstances. Think about if they have a chronic health condition, suffered a bereavement all manner of things that could be the cause of them not being outside in the world as much as you think they should. Don’t take the easy option and accept the gossip no matter how credible the source because it is just that their take on what they “think” is happening. Which doesn’t make it the truth.

Scrap Busting

Around two weeks ago I stumbled upon a sewing challenge on social media and thought why not. Up until now I have always been too scared to join in with sew along projects, as I never felt that my work was good enough or that I had enough experience. However with this challenge as it was using scraps of fabric cut into 2 inch wide strips or 1 inch wide strips, I felt that I wouldn’t be under any pressure to be an expert quilter. 

I was in a bit of a panic though as I had joined two weeks after the challenge had started and members of the group were already sewing their strips together or had finished sewing them. I joined late on a Friday night, as I had been unable to sleep I had been on social media, when a video from Sugar Bowl Crafts  popped up. I watched it and thought that looks fun and it was promising a quilt made in record time. 

For the uninitiated a sew along is a just a fun thing to do, completely voluntary and you either are sewing part of a project that will be sent off and joined up with everyone else’s or a project for you to complete at home. Some sew alongs require you to buy kits or set fabrics, others you get to choose your own. I liked this one as it is using scraps and I have been on a bit of a fabric buying ban because I am drowning in fabrics. Some I have bought and others I have been given. I always keep my scraps as I hate the thought of spending money on fabric and then not getting the maximum use out of it. I have scraps stored in 3 different locations and it was starting to feel overwhelming so the idea of a scrap-busting quilt really appealed to me.

I recently made a quilt for Mr Myasthenia Kid, using some charm squares ( these are 5 inch squares of fabric you buy pre-cut). He has wanted a quilt for ages and I kept promising him I would make one. But I never seemed to find the time. Since getting the embroidery machine and the dogs passing away at the start of the year, sewing had taken a back seat. I had lost my sewjo, I had done quite a bit of machine embroidery but actual sewing not much. As I was making Jay’s quilt the love for sewing came back, I was planning on starting the Anna Maria Horner quilt kit I bought last year but have been terrified to start it in case I messed it up. Plus it is a huge quilt almost king sized and my largest quilt that I have made hasn’t even been half that size. So this sew along was also a chance to put together a large quilt – my largest yet. So it was a win win on all fronts.

Jay’s quilt.

The quilting on this quilt took over 4 hours and I lost two needles in the process. I am so pleased with it though as nothing was bought to make it. It was all made with items I already had in the house.

The sew along quilt’s design was random strips of 2 inch wide fabric joined together (or you can do one inch wide). My first job was to go through my scraps and pull out the fabrics I wanted to use and sort them into colours. Each piece of fabric tells a story as I can remember where it came from and what project it was used on. I had 4 charm squares left from Jay’s quilt above, fabric left over from the lap quilt I made my mum for her birthday last year. Point to any of my fabric strips and I can tell you if it was gifted, came in a subscription box or if I bought it. I love that about this quilt it makes it highly sentimental and it is like my sewing journey in one quilt. 

I thought the sorting and prepping of the fabric would be a quick process. I hate this bit of any project, I loathe cutting stuff out. I am the worlds slowest and you can guarantee I will mess it up due to my poor maths skills (why thanks Dyscalculia ). I have a creative grids stripology ruler which has been a godsend. It has cutting channels on it every inch and half inch, so you can cut across the entire width of the fabric and know that the width will be correct…..as long as you chose the correct cutting channel. Eventually after several sessions over a few days I was in a position to start sewing the fabric into long strips.

I sorted the fabrics into colour groups. Group 1. Red / pink / orange, Group 2. Blues / purples, Group 3. Yellow/ cream / white, Group 4. Green,Group 5. Grey / black / purple grey. Within those groups I put all the same fabric together and put them into piles (pinning them) that way when I sewed the fabric strips together to make my large strips I could choose fabric from a pile ensuring I didn’t have to worry about sewing the same fabric together next to each other. It did sort of remove the randomness, rather than taking a chance and sticking my hand into the bag and pulling out a strip to sew.

I also at the same time cut one inch strips, from the same scraps and sorted them the same way.

Once the different fabrics were sewn together ( as above), the metres ( and it was metres) of fabric were then cut into 10 inch strips. For the 1 inch strips once they have been joined together you cut them into 5 inch strips.  The next part is to then sew 6 ten inch strips together to make your 10 inch block. Here are the 60 blocks that I have sewn, just so you get an idea.

I find it amazing how different the blocks look from a distance and all together.

Here are the first 23 blocks that I laid out on the kitchen floor.

I had to get hubby to stand on a chair to take the photo for me. Over the next few days as and when I had the energy I would put together the remaining fabric strips and turn them into blocks. Until yesterday when I finally completed all the 10 inch blocks I intended to make.

I had to do the layout in two settings as there was no more floor space!

Here are the remaining blocks, being “lab” tested 😄😄😄

I love the layout that I have in the photos so I am contemplating sewing the blocks together like this after they have been trimmed to 9.5 inch blocks.

I am now starting on my one inch fabric strips, joining them together. So far I have done the greys/ blacks/ purples and I have also completed the blues. I have three more huge bags of one inch strips to join together before I then cut them into 5 inch strips and turn them into blocks the same way the 2 inch strips were. I intend to use the 5 inch blocks as a border around the quilt – which is different to the sew along border but I like being different. I have no idea how huge this quilt will turn out but hubby is already making noises about it being on the 3 seater leather sofa as it combines all the fabrics that we have in the lounge along with many more!

I have really enjoyed working on this but my old injury / problem has come back. My nerve has become trapped in my neck again and is leaving my hand and forearm (left side) with pins and needles / numbness. It is just as well that I haven’t spent any money on the quilt as I have had to book in with my private physio again which costs £45 for 30 minutes. She is ace but on a limited budget it’s a lot of money to find in one go. So I am having to set a timer when I work and do 15 minutes, have a break and then do 15 minutes. I will be seeing her a week Tuesday.

It isn’t just sewing that is triggering the trapped nerve but any movement at all that involves my arm. Even using the chromebook or taking a drink is enough to have the cold pins and needles feeling start. It is highly irritating as it means I am severely limited in the amount of time I can spend doing the stuff I love. I am hoping the physio can get the blasted thing untrapped and me more comfortable again.

I will be sure to update you all with my scrap busting quilt progress.

Miserable ….you fill in the blanks

On Tuesday 16th July I went to my doctors appointment. As I can’t get to these things alone due to my mobility issues and no longer having a driving licence, Jay and Dembe ( who is training to be my assistance dog) came with me. I had the doctors appointment as I have a lump at the front of my neck near my adams apple. It can’t be seen by the naked eye but can be felt. When I move my neck and head in certain positions I can feel the lump pressing on my esophagus so it was important that this was checked out. 

We managed to rock up about three minutes late due to an unexpected road closure. We had hoped to prk up outside but instead had to use the carpak across the road. This all added extra minutes that we didn’t have as Jay had to assemble my mobility scooter, get a parking ticket and get Dembe’s lead on. We had put Dembe’s high viz yellow coat on before we left the house. It says on the side of it “Assistance Dog in Training” and when he is “working” we put his coat on him so that members of the public are aware of what he is doing.

We managed to get into the doctors a little stressed due to being late. The main waiting room was practically empty it was as I was getting checked in that I was told my doctors room was at the end of the corridor. This was a major ballache as this waiting room is literally the width of a small houses landing or hallway. You can’t swing a cat in there. When we got there it was jammed and there were only two seats left. Dembe was a little perturbed that so many people were so close to him. He is used to be given space. It’s not that he won’t behave, it is just this was our first visit to the surgery with him and we were playing sardines. The doctors surgery was also unbearingly hot. If I am complaining of the heat it is boiling to a normal person.

Poor Dembe was panting away, he wasn’t unsettled but he was fidgeting a bit to get comfortable. We had a massive amount of treats and just practiced calm giving to get him to settle which he did. Considering he is just 8 months old today and this was his first visit he did well. Especially with it being so busy. There was no barking or crying despite the loud noises coming from the floor above. He really does know that when his coat goes on his behaviour has to change and it is wonderful to see. Many people in the waiting room were complimenting him on being so good for an obviously young dog. So what happened when we went into the doctors consultation room has really angered me.

The doctor made it clear from her facial expression she wasn’t happy that I had both my husband and my assistance dog with me. Jay sat across the other side of the room and kept Dembe occupied. Doing various exercises silently so he was totally focused on Jay. He was sat right in front of Jay, well out of the way of the doctor. The only noise he was making was panting. The doctor needed to examine me on the couch as I made my way across she piped up “Your dog is very hyperactive”. Had I not been in a doctors surgery I would have probably given her a gob-full. Instead I pointed out that he was just 8 months old, he was in training and that panting was not the sign of a hyperactive dog but a hot dog. Jay decided to take Dembe out of the room and walk him around outside the building, he was really angry with the doctor and didn’t want to end up saying something that could impact my treatment. I was so angry that this doctor that obviously knows fuck all about dogs was making snide comments about him. A dog that had done absolutely nothing wrong. I didn’t bother to speak much at all after that because I knew if I started I may have ended up having to look for a new doctors surgery. 

It seems that kids can wreck the joint at the doctors surgery, run around screaming, grab at people etc – all stuff I have witnessed. But a dog that is simply panting is hyperactive. Honestly the stupid cow should have seen him the first night of puppy training 7 weeks ago when he was play bowing, barking and generally being a dick – that is hyperactive. I would say if Dembe had been naughty or hadn’t behaved as he should. I am not an idiot. The whole reason we are doing all these training courses is to ensure he conducts himself well when working / out in public. So for an uneducated, miserable cow of a doctor to say he was misbehaving by snidely saying that he was hyperactive is bang out of fucking order. It’s been 10 hours since the appointment and I am still fucking seething about it.

 I have seen some crap doctors in my time but she took the biscuit and it wasn’t just the issue with Dembe. I also told her about my dry eyes and the fact they are drying out at night causing abrasions on my cornea. She said she would prescribe me something for my eyes. I told her I needed something at night as that was when the damage is occurring. My eyes are very dry during the day as the Hyloforte drops are only providing about 20-30 minutes of relief at a time. But I need something at night to stop my eyeballs sticking to my eyelids. She has totally ignored that and prescribed me drops for day time use. I give up, what part of the conversation didn’t she get. She didn’t even think it might be important for me to see an ophthalmologist to get my eyes checked. To see of we could get to the bottom of why my eyes are dry and what could be done about it. She has taken it into her head that I am allergic to liquid paraffin when I have used it in another eye ointment perfectly fine. I was so pissed off by this point other than repeatedly bang my head against the desk I had to just smile and breathe rather than tell her what a giant fucking cockwomble she was. I do try not to lay into doctors, its a thankless job, so many targets and patients to see. But of you aren’t going to fucking listen and then make pronouncements on my dogs behaviour despite clearly being no expert then I am afraid you deserve everything this post has coming for you.

As I left the doctors I had to book in blood tests ( check my thyroid) and the doctor is doing a referral for an ultrasound to check out this lump which she believes is a lymph node. I can tell you something for sure I will never be making another appointment with her again. The receptionist was really lovely and said what a lovely dog Dembe was and how well behaved he was. She wouldn’t have known what had gone on in the room as I was literally at the desk seconds after the appointment was over. As I looked out of the surgerys door I could see an old chap fussing Dembe and Dembe sitting there loving it. No barking, no crying just a well behaved, panting dog. That made me even more angry.

Jay said the old guy was talking to him for a while and made a massive fuss of Dembe. Dembe was a little scared at first but Jay passed the guy one of Dembe’s treats and he was won over immediately. He said it was so sweet. Jay said the guy was obviously quite lonely but because of the love he was showering Dembe with Jay just let him and was chatting away with him. Jay said after about Dembe that maybe we should get  him trained as a Pets As Therapy dog as he loves having attention and has such a loving nature. It’s definitely something we will consider in the future once we have his training mastered.

After the doctors we walked over to the mini Marks & Spencer as I had a delivery to pick up. As we walked through the door all the staff were smiling at Dembe. It is lovely when we take him anywhere with us in his assistance dog vets, people who have looked as miserable as sin just moments before just beam at him. I love the way this dog makes people smile …apart from you know who..Miserable…….you fill in the blanks.

Dembe was really well behaved in M&S and on the walk back to the car. To reward him this afternoon we took him up on Woodbury common and I accompanied them on my mobility scooter. So I will end this angry blog post with some beautiful photos of my hot dog, not hyperactive one. Stick to diagnosing people love, as animals are just not your forte.

The last one is Dembe working, wearing his assistance vest.

Thanks for reading!

Dry Eyes

I got diagnosed with dry eyes over ten years ago, it could have been 15 years ago, I just know Travis ( our first Weimaraner) was alive then. How I found out I had dry eyes was due to the fact a cigarette end had blown into my eye whilst we were in the car. The agony it caused I will never forget. I had a burn to my cornea and thankfully no lasting damage but a few weeks later my eyes were feeling very sore so I took myself off to the eye infirmary where I had a few tests and found out my eyes were incredibly dry.

On and off for years they have been treated ( very poorly) with the first line treatment for mild cases of dry eyes hypomellose. That treatment in all the years I have been taking it does nothing, the liquid evaporates off my eyeball in a matter of seconds and I am back to the sore, itchy burning feeling I basically put up with 24/7. On the odd occasion when I have made a fuss I am given lacrilube to use at night, which is alike vaseline for your eyeballs. It is fabulous stuff but it means you can see fuck all for hours once it has been applied so has to be done when you are certain you are going to sleep.

I have brought up with numerous doctors that my dry eyes were getting worse, that I am waking up with crusty eyes that then burn and sting for the rest of the day. For some reason I just haven’t pushed this and have allowed myself to be fobbed off with the excuse that it is my medication causing my dry eyes as if this is in some way my fault. I am now coming off all medication that causes dry eyes – even though I have been put on these after the diagnosis of dry eyes was given.

On Sunday morning I woke up with with my eyelid stuck to my eyeball. That is as grim as that sounds. Only I didn’t twig what was going on until after I rubbed my left eye and it felt like the top surface of my eyeball had been removed. The pain caused my eye to water profusely. I also worked out that this has been happening for months to a much lesser extent, I keep waking up with a searing pain in my eyes, my eyeball has been sticking to my eyelid.

I realised quite early on, that I had an abrasion on my cornea but I just didn’t want to have to go to the local minor injuries unit with the high probability that they would send me onto the eye infirmary. I foolishly thought how bad could it possibly get ? I decided that I would ignore it in the hope that the pain settled because ignoring it has always worked so well in the past. We decided that we would take Dembe up to the local supermarket to give him some experience of dealing with a shop environment, noise and large volumes of people. He handled it like a pro and we were both so proud of him.

He is walking like a dream and has stopped jumping up at me when I am on my scooter. He now sits beside me and waits for me to give him a cuddle.

My eye pain was ok as long as I was 100% distracted, so I threw myself into binding a quilt I had made for Jamie aka Mr Myasthenia Kid. I wanted to get it finished and he wanted it finished and on his bed! I managed to get that done but as soon as I finished and no longer had anything to distract me the eye pain ramped up by about 500.

I actually waited until Monday to take this photo.

We decided we would start watching season 3 of Stranger Things. I sat with a hot compress on my eye because my logic was the heat would help it as they advise a hot compress with dry eyes. I was kidding myself still that the eye pain was dry eye and would settle. I lasted 20 minutes until I asked Jay to take me to the local hospital where they had a minor injuries unit. I knew (well I hoped they still had it ) that they had all the kit for an eye exam, I kept my fingers crossed that they wouldn’t insist on sending me to the hospital and the eye infirmary. As I knew the wait would be horrendous and sitting up like that for several hours would knock me for six.

Jay dropped me at the eye infirmary and he took Dembe out for a walk. I am extremely grateful that I was seen within 20 minutes of arriving. It wasn’t busy but there were other people coming in with more serious issues than I had. I was ushered in but immediately told that they would only do a basic eye exam and then send me to the main hospital as I had Ehlers Danlos syndrome. I questioned this as I knew it was just an abrasion and no need for the trek to the hospital ( one I hate due to a couple of twatish doctors based there). I was informed as the eye is made up 100% of collagen they couldn’t mess about. I was shocked that this nurse was so on the ball with EDS. Normally they are clueless, not their fault if they have never come across it I must add.

I made a few grumbling noises along the lines of its just an abrasion there is nothing wrong with the rest of my eye and that sitting for hours up there would make me much sicker in the long run. I had an eye test which I think I did reasonably well or well enough to convince her I wasn’t in danger of losing my sight imminently. So she acquiesced and did a proper eye exam. The local anesthetic stang like hell, it felt like I had a million paper cuts on the surface of my eye and she had poured vinegar on it. Once the stinging wore off it provided me with a lot of relief as the pain was dulled massively. She had a look at the structure of my eye which was all sound. She then added the lovely yellow stain that they put in and immediately could see I had a superficial abrasion right across the centre of my eye. I hadn’t been able to pinpoint where the pain was coming from my eye hurt and hurt more every time I had to blink. It made sense that it was right across my eye.

Me when I got back from the minor injuries unit. I was given antibiotic ointment, as my eyes were so dry it would provide some relief as it has to be put in 4 times a day. I was made to promise that if it wasn’t any better the following day I had to head to the main hospital and get it checked out. Thankfully it was an awful lot better the following day.

I have an appointment with my gp next week that I had booked for another reason – which I will still be bringing up! By the time I go to my appointment the local injuries unit would have informed them that I had an abrasion on my cornea caused by my eyeball sticking to my eyelid and that my dry eyes need to be treated! However as it is more than a week away I have spent £30 on dry eye ointment for night time to keep my eyes moist and to prevent them sticking to my eyelids again and some much stronger eye drops that should provide more relief than the tap water ( sarcasm but that might as well be what it is) I have been prescribed up until now and that someone saw fit to remove from my repeat prescription list. 

My eyes are still quite uncomfortably dry, I am awaiting my delivery of the day time drops as nothing I have here if I wish to be able to see at all will provide any relief. When people say they have dry eyes unless you have experienced it you would never realise how bloody painful it can be.

Its that time of year again!

Well what a week, I have been super busy making gifts for family and friends for Christmas, whilst battling the crippling neck pain and yesterday having a stomach upset meaning I was racing faster to the bathroom than Usain Bolt. It wasn’t pretty and it wasn’t fun. It took a good 12 hours for my tum to stop cramping. Anyway that is enough bathroom talk for the opening paragraph of my blog post.

On top of all of that I have woken up with a very sore finger on my right hand. Its one of my typing finger’s so this week is going to be a photo blog , the joint has swollen, I’m pretty sure its my arthritis playing up just for a bit of variety. I haven’t shown you any photos for what seems like forever. So here they are.

Last weekend we decided that we would get the Christmas decorations out. It is a little early for us but hubby is out with work this weekend and would have been too delicate to climb the ladder into the loft on Sunday safely. All in all it took 90 minutes which is pretty good going when you think the dresser had to be stripped and cleaned, all the pottery that was coming off wrapped and packed and all the gorgeous Christmas stuff put out.

I’ve been beavering away making lots of gifts and then I decided why not add to my work load and instead of buying gift bags buy a job lot of plain cotton bags (blanks as they are known by embroidery people! I found that out this week) and thought I would embroider them. That way they wouldn’t get thrown away and could used for years rather than one Christmas ( I always try to save gift bags but many of them don’t make it through until Christmas having been bashed about whilst being moved trying to find other things.) I bought myself some variegated thread as well, so did quite a few using that.

Sorry the pictures aren’t brilliant, these were taken immediately after they were done and needed an iron really. Now they are stuffed with presents. Here are some that I did using “normal” thread and much better photographs

I finally managed to complete Mr Myasthenia Kids advent calendar that I bought in August but had been putting off for months as it had box pleats something I have never done before. To be fair it wasn’t too bad. We are still waiting for a dowel to hang it from the lounge door so it’s in its temporary location here.

I fell in love with this fabric range from Makower , I have a table runner using this design. On Black Friday I managed to pick up some more fabric in this Christmas range with plans to make some cushion covers. At the time I  thought I may get this done before Christmas then as days passed I did start to wonder if I meant next Christmas as there seemed so much to do ( and I kept adding to it). I managed to knock them up today, which I am chuffed about as I had to use my overlocker to finish the seams to stop them fraying so that they will last and last. I made 4, two of each fabric design

I have two Christmas lap quilts that need bound so that they can replace the current quilts on the sofa. I am hoping I will get these done in the next few days. I will be making a scrappy binding using the off cuts from the cushions and table runner and any other Christmas scraps I can get my hands on. I will get these finished before Christmas, even if it kills me! Which I might do.

Tonight I am shattered, I hope that I manage to get some sleep tonight and stop waking up in a blind panic with all the things I need to do – even though I don’t work I find this time of year very stressful. There is so much pressure for things to be perfect even though in reality nothing is. I do have a few things I need to make for other people and I can’t let them down as it will mess them up for Christmas. I am feeling the pressure.

Next week I start physio, I am really hoping that we can make some difference to my neck issue.