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 I know some people have created this fairy tale in their heads that either have withdrawn from society or that Mr Myasthenia Kid doesn’t let me out in the world.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.

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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.

What are your aims with this appointment?

For a while now I have been moaning that my neck is sore / hurts / agony, take your pick. Last week I had blood tests to see if I was suffering from nutritional deficiencies and that is what was causing the numbness / pins and needles in my arms and face. Today I finally got to see a doctor. It was a long wait as with hubby’s hours it is easier if I can book an appointment on his day off, rather than have him come out of work and take me. It was actually getting the appointment to have my bloods taken that took the time to organise. It would appear Tuesday is a popular day. I then had to have the doctor’s appointment a week later. As luck would have it my neck actually wasn’t too sore today, the day I would finally see the doctor.


As this appointment was needed quickly ( although three weeks was three weeks too long really) I decided to take pot luck. I usually try to see the same doctor so there is some continuity of care and they have a basic idea of what is going on. However I was feeling very let down after my appointment in July where my neck pain was put down to stress. Now I was under a great deal of stress at the time mum had been diagnosed with cancer and there were other things going on in the background. So it would be an easy diagnosis to come to but even then I did come away from the appointment thinking I really should have been examined before this was written off as stress. It makes me worry that if I saw that doctor with chest pain that again it would be written off as stress when I could be having a heart attack. It’s not a nice situation to be in when you doubt your doctors clinical judgement. They are supposed to be the experts and be on your side, yet when you get written off as a basket case due to stress, it makes you not want to fight. Which is what I should have done because maybe I wouldn’t be in as much pain as I am now.


I will be the first to admit that yes I have been having some mental health struggles this year due to losing Willow and so many close friends and family in such a short space of time. I also went through a great deal of stress in the summer. I understand completely that mental health issues can manifest as physical issues. Yet the diagnosis of stress or anxiety or depression should only be given after an examination to check that there is nothing mechanically wrong. That didn’t happen during my appointment in July and I am angry about it. I am angry at myself for not asking the doctor why he or she felt that my symptoms of numb hands and neck pain didn’t warrant an examination. I understand that doctors especially gp’s are under enormous pressure, especially with health budgets being slashed, Don’t believe what the government tells you when it says its spending more in real terms its less money and our health service is drowning because of it. Just to make sure if this government stays in power when it suggests privatisation people will believe its the only thing to save our NHS and people like me will have no access to healthcare as we won’t be able to afford the insurance premiums. That’s my political rant over, I don’t do politics very often here but it needs said.


Anyway as usual I went off on a tangent, it makes me really angry when doctors are lazy and use a mental health diagnosis against a patient, which I feel is what happened to me in July. My notes say I am being treated for anxiety and depression, my mother has just been diagnosed with cancer so of course my physical symptoms are a manifestation of that. See how easy it is for a doctor to disregard real symptoms? The sad thing is people with anxiety and depression don’t have the energy to fight that kind of lazy doctoring. That was the position I was in then. I was happy to go along with what the doctor said because I trusted them. I am angry because they disregarded the Hippocratic oath of first do no harm. By brushing off my symptoms of stress they left me open to harm. I could have been suffering from a nutritional deficiency like B12 deficiency, a blood clot, vasculitis   a pinched nerve. However that doctor would never know as they were convinced it was stress and an increased dose of amiltriptyline would do the trick.


Today I was dreading my appointment, my mind was racing, was I going to be dismissed again as being stressed? Or would this doctor take the time to examine me?  I know doctors make mistakes and they are only human but a friend of mine almost died from meningitis after a doctor didn’t examine him. His wife found him unconscious in their home. If she hadn’t come home early from work he would have been dead. I had worked out through google and the fact that I have an ounce of common sense that the numb / pins and needles in my arms and face were being caused by a pinched nerve. Stress does not disappear when you put on a soft neck collar. Armed with this information plus the discharge notes from 2016 that contain the radiographers report from my MRI which says I have reversed cervical lordosis. I was ready to do battle and push for a diagnosis.


Why is it when you are prepared for a fight you never get one? Is it because you are giving off the don’t fuck with me vibes? I don’t know. This doctor examined me, so thoroughly that I have been in an awful lot of pain for the remainder of the day. I can’t complain about that at least this time I was taken seriously. However something they said really threw me, after they examined me they asked ” and what are your aims for this appointment?”. I have to say this really threw me, looking back now I wish I’d said ” well my aim is that I get a fucking diagnosis, after all you’re the doctor”. But I imagine that wouldn’t have gone down well and I may be looking for another healthcare provider if I had. But seriously what kind of question is that? That’s business speak and that has no place in an NHS doctors appointment. Why ask that question? Had I not had years of experience as a manager I may have found myself at a loss for words. Why do most people go to the doctors? To get help? Support? Advice? A diagnosis perhaps? Did they think I was going to say ” I want you to wave a magic wand and make my pain go away?” Did they think after years of dealing with doctors that I would have unrealistic expectations? I have Ehlers Danlos Syndrome I have learnt to expect nothing from a doctor other than a shoulder shrug at best. As you may be able to tell this question ” and what are your aims for this appointment” has really bloody annoyed me.


I was expecting at some point they were going to ask me to complete a PDP ( personal development plan) with SMART objectives Specific, Measurable, Achievable, Realistic, Targets. Or maybe they would have me complete a Root Cause Analysis so we could get to the bottom of what was triggering my neck pain. You see I did 18 years of bullshit management speak. To my shame I taught this shit to up and coming managers in a previous life. It has no place in the NHS as I am a patient not a customer, it has no place in an appointment because all I expect in an appointment is for the doctor to do their job. I have no idea what you will suggest because I am not a mind reader, I thought perhaps you might say I need an X-ray or an MRI or maybe even physio but all I wanted from you was a plan. I don’t know what your other patients want from you but from this patient to you please stop asking that question or think of something else to say. I get that some patients may come in expecting top-notch state of the art care like they see on Holby City  / Greys Anatomy/ any other popular hospital drama and your job is to manage unrealistic expectations. I don’t and that question has really annoyed me ( no shit Rach, I can hear you all saying!).


Now some of you may think that I am over reacting to this innocent question but to me it was a loaded question. I don’t doubt that this doctor had my best interests at heart, they after all discovered that I have altered sensation in my left arm and areas of complete numbness, they also have given the diagnosis of a pinched nerve in my neck. Which was the same conclusion I had come to. To me the question could be one asked by someone trying to figure out what the bare minimum is that they will get away with providing . Call me cynical but after having to do battle with numerous doctors over the years I know that cost is coming into clinical decisions more and more. It can’t be helped when the purse strings have been tightened so much that even targets for patients with cancer are being missed by the majority of NHS hospitals. If  my aim was to have my pain reduced that’s a quick win as they could give me a prescription for pain meds, if I wanted a referral to a spinal surgeon then my expectations would have to be managed and ( as I know) physio would have to be tried first. As it is I want to avoid surgery on my neck at all costs. To me the risk are just too high, that unless I am completely incapacitated by pain,  it’s not an option I want to go for. 

Having seen a spinal surgeon before I know they like you to try all options before you go for surgery and I am happy with that. Physio treatment in 2014 or 2015 meant I avoided a spinal fusion. I know that without having jumped through that hoop any referral to see a surgeon would be rejected by the hospital because all non surgical routes had not been explored. 

I have declined using the NHS physio team as unfortunately they are utterly useless when it comes to dealing with people with EDS. The last NHS physio I saw was supposed to be an expert on the condition and I could have written what she knew about EDS could have been written on the back of a postage stamp. She became totally fixated on my wheelchair, so none of the exercises were there to help the problem I was seeing her for but more to get me walking rather than using a wheelchair. I use a wheelchair due to the fact I faint without warning which leave me at a serious risk for a head injury, I also dislocate my knees, hips, ankles and spine when I walk more than a few metres. I also develop bursitis in my hips if I walk too much ( too much being more than a few metres). I had to give up walking my dogs in 2008 as I kept waking up on Woodbury common bleeding not knowing what had happened to me and the dogs wandering down the path in front of me. Thankfully the doctor I saw today was horrified at this physios dangerous fixation and agreed with me that preventing head injury and pain was imperative. Someone who was supposed to be an expert in EDS and PoTs should have known that. Hence why I am incredibly sceptical as to who gave this physio the title of an EDS expert because I have more knowledge than they do.

So I am going back to the private physio I saw in 2014 and had fantastic results with. It is incredibly expensive but I am hopeful if anyone can help me avoid spinal surgery Jane will. I hate using private instead of the NHS but I am afraid NHS appointments are too rushed. I need longer than 15 minutes, I need someone who will work with me and will admit that they know nothing about the condition rather than pretend they are an expert. It also means I wont have to travel 30 minutes to an appointment which will exhaust me before I even get there. Or the unrealistic expectation that I can go three times a week, when I don’t have a driving licence and can’t manage public transport alone as my wheelchair is attendant pushed how am I supposed to get there? Because I am a paying customer there I am  treated in a much better way and they understand that there us a life outside of the health service something which some NHS staff struggle to understand. I am incredibly lucky that I am in the position where currently I can afford to pay for private treatment but it will still put a strain on my finances.

So I wonder what will be the next go to question at any future gp’s appointment? As long as it isn’t “and what do you want me to do about it?” I think I’ll cope!

Insomnia

I have written about my struggles with insomnia previously, thankfully though its not been something I have struggled with since around 2016 when I was prescribed melatonin and the antidepressant Mirtazapine . Both have improved my sleeping habits immensely. I also take a low dose of amiltriptyline to prevent migraines and again this helps me sleep….until last Sunday night (18th November).

Sunday nights have been a sleeping issue for me as long as I can remember. I think the sleeping problems started over the anxiety of going back to school on the Monday. Throughout my school years I was bullied, so going to school was a cause of anxiety. If ever anyone says to me their school days were the best of their lives I want to punch them in the face. For me they were a source of misery and I never knew who would be gunning for me next. Primary school was particularly awful, comprehensive school was slightly better but I just felt so out of place there having come from a tiny school of less than 400 pupils to then be amongst over 800.

After school I then had the Monday morning work anxiety. I would be ok on Sunday until about 5pm and then I would begin to worry about events that would take place at work during the week. Again I was the target of two bullies unfortunately both were my boss and when one left the business the other one jumped right in and took their place. I loved my job and was good at it but it did absolutely nothing for my mental health.

So now after years of Sunday night anxiety its ingrained in me and I can never sleep or settle down for sleep very easily on a Sunday evening. So when it happened this Sunday I just shrugged my shoulder and thought oh well I’ll sleep Monday. Yet when Monday came around the same thing happened no sleep. I put Mondays lack of sleep down to having bloods being done on Tuesday morning. Its always a drama getting blood out of me. It was it took 2 people three attempts. I’ve got a lovely blown vein on the back of my hand. 

Tuesday was also dramatic as our washing machine broke down, well died to be more accurate. It was about 5 years old and had been a really good machine – washing machines don’t seem to last very long in this house. Probably due to the dogs stuff that fills the waste pipe with sand. I have a Rug bag  which is what horse owners put their horses rugs in to stop all the dirt etc going into the machine – its a bit like a lingerie bag for horses lol! A new machine was ordered and set up for delivery the following day. We can’t be without a machine when we have two elderly dogs who have accidents.

So when I lay tossing and turning last night I presumed I was anxious about the new machine being delivered. I wasn’t remotely anxious I just couldn’t drop off to sleep and if I did drop off I was only staying asleep for ten minutes or so. Today I am exhausted three nights of very little sleep has destroyed me after being used to sleeping again. On all three nights out of desperation I have increased my melatonin, added in an extra amiltriptyline and then last night I toyed with taking my last diazepam which is my emergency pill for either the dentist or when my neck pain is off the charts. I don’t have the doctors until next week  and I will ask about an additional prescription of diazepam as when the neck pain is bad its the only thing that relives it.

Last night well technically this morning I didnt drop off until gone 02.30am , at 7am I received a text message to tell me that our new washing machine would be with us in 20 minutes. So bang went any chance of managing to sleep for a bit longer. Jay has gone back to bed. He can fall asleep pretty much whenever and wherever he wants. I am unable to do that and I am always terrified if I sleep during the day I wont sleep at night. So today I will push through until I can’t go on any longer. My plans of using my embroidery machine have gone out of the window. I am so out of it I’d be a danger to myself holding a pencil let alone using machinery. If I didn’t have a load of things being delivered today I would have crawled back into bed right now, regardless of not being able to sleep tonight.

Insomnia causes my pain levels to increase, my mood to plummet and makes me thoroughly miserable. I hate not sleeping because the knock on effects can last weeks. Its been so long since I have had a run of three nights that I had forgotten how bloody awful insomnia makes me feel. 

Fingers crossed that at some point this week I fall asleep before 2.30am!