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!

Update on Dembe

For this week’s blog post I thought I would give you an update on Dembe. For those of you who would like to see more of him, he has his own blog over at http://www.thedembediaries.com, where I publish what we have been up to over the previous week, with video’s and photographs.

Dembe was 10 months old on Monday (16th SEptember 2019). He now weighs 32kg and is 23 inches to the shoulder. I can’t sing his praises loudly enough, he is a simply adorable pup. He is so loving, sensitive, clever and just happy. I have never known such a happy dog whose tail only really stops wagging when he is asleep but he has also been known to wag it in his sleep as well.

We are training him to become my assistance dog, so we have been doing lots of training going into various different environments, so that he can cope with strange noises, people, smells etc. He becomes a different dog when his yellow vest goes . He knows he is there to work and is on his best behaviour. Like anyone though he has his good and bad days . His bad days though most people wouldn’t even notice, Jay and I are acutely aware.

We passed level one basic obedience training and handling back in July and we are now attending level 2/3 with him for the next few weeks. We all enjoy going to the class and being able to ask the trainer questions and for advice. Dembe loves seeing the other dogs and his time spent with Jay is creating a fantastic bond between them.  When I look back at how he was at the first training class in June to how he is now the transformation is magnificent. We have a dog that listens to instructions and walks beautifully to heel. In fact on a few occasions Jay has been asked by complete strangers for hints and tips on training. Which always makes us laugh.

He is a really sensitive soul, he hates thinking he has done anything wrong. If he accidently hurts me ( which all puppies do clonking you with their paws etc)  he panics and smothers me in kisses. He is such a very loving boy who likes to be touching you when he sleeps or sits next to you. He is a mummys boy but it is wonderful to see how excited he gets when Jay comes home or Jay goes to give him a cuddle.

He is very clever, it took me a matter of minutes to train him to remove my socks. He can retrieve various toys from his toy-box when you ask him to. If you say “where’s crocodile?” “find him” he runs to the toy box and will retrieve his favourite crocodile toy. He will do this with a few toys like piggy, doggy, baby bear, baby blankey and blue dinosaur. I have also had him retrieve his empty kong from upstairs. We were talking about this at dog training last night and apparently this shows he has an aptitude for searching or being a search dog. This isn’t something we have trained him to do. One day I asked him to get crocodile and he did it. I thought it was just a fluke so I asked him to do it again later and he did. I then waited for Jay to get home and showed him. The next day I asked him to find Piggy wig and he did. Now it is our party piece when we have visitors!

As he is 10 months old there are things we still need to work on, things that we have let slide that are now becoming an issue. He is very keen to be as close as possible when you are eating. Which is a bit of a nightmare on the rare occasions we have guests. We need to stop the sitting next to you attempting to get your head in your plate nonsense that is happening . The other thing that needs working on is his need to jump up at me when I am on my mobility scooter and I have come to a stop. However that needs Jay to keep him on a shorter lead and to stop him getting the ability to jump. That will be a huge challenge as he never will see that he influences or has control over what Dembe is doing. Despite doing all these hours of training so it can be a bit annoying at times when you are having the same conversation over and over again. 

One thing I am very sure of is I want a dog and not a robot. I love his character and I don’t want him to feel like he can’t be himself. 

It was very funny on Sunday as we were taking a trip around a supermarket. This one was laid out differently and had a huge precut cheese section at the end of the deli counter. There is nothing in the world that Dembe enjoys more than cheese. He will literally spin in circles if you get the cheese out of the fridge. So here he was confronted by his most favourite thing in the world at Dembe height and easy to access. I closed my eyes fearing we were going to have to pay for a huge block of cheese because he had sunk his teeth into them. He sniffed for ages, every piece of cheese got a sniff but he was very restrained and when Jay told him leave he did indeed leave it. That was a massive test in self control for him and I was so proud. 

But even prouder when my friend who was the duty manager told me the story about the guide dog that visited their store. When you think of Guide dogs for the blind you think of superbly trained dogs that would never be tempted by food whilst working. They are the dogs that are so well trained they put many other dogs to shame.

At the side of the fish counter in her store they have a freshly cooked pasty section. At dog height…how perfect. Beccy told us that as the owner of the guide dog was talking to the fishmonger, the guide dog took a sly lick of a pasty  at the front of the shelf. Then stared down the fishmonger who had watched him do it, in almost a dare to see if he would tell the owner. The fishmonger said the attitude from the guide dog was hilarious and he did indeed keep quiet! That really made us laugh and made him obsessively sniffing the cheese not such a big deal, I mean if guide dogs get a bad day!

Dembe makes us laugh on a daily basis. I didn’t know it was possible to love a dog as much as I love him. He likes walking around carrying stuff in his mouth and he walks around with his antler chew like pipe. When we first brought him home it was really hard, we were dealing with so many conflicting emotions initially it felt like I was just going through the motions. I didn’t feel that bond with him like I do now. I was constantly reminded that I didn’t know him like I knew Mollie, Frankie and Willow because I had known them years. It fueled my anxiety because I was constantly worrying that if there was something wrong with him I wouldn’t know or I would miss the subtle signs that I wouldn’t have done with them. Now however I feel like I know him more and we do have a wonderful bond. I know I love hima crazy amount whereas before I was always doubting myself that I did.

At times I wondered if we had done the right thing by getting him so soon after Frankie and Mollie passed away. But I credit him with getting Jay and I through that awful dark time. We wouldn’t be without him and he brings such joy to us both.

Everyone who meets him, falls in love with him and his gentle nature. In all the time we have had him I have never heard him growl. Bark yes, he likes to do that a lot. Which makes me laugh as everything I have read about Labradors says they seldom bark. Obviously Dembe didn’t get that memo! 

He is also very good when I am poorly and he adjust his energy level accordingly. He did it when I was poorly with a chest and sinus infection about three weeks after we brought him home. He would sleep all day on my feet and only run around like a maniac when Jay came home for lunch and at the end of the day. If I am feeling crappy he will sleep beside me on the sofa having a cuddle. If I am feeling brighter he will want to play more and have more engagement with me. Again this isn’t something we have taught but this is something he has done instinctively, just like his Uncle Frankie.

I could go on and on about Dembe the wonder dog but I won’t bore your further with this quick update.

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.

Drained

Well the clock has run down and I still have no clue what to write this blog post about. Last week I was full of energy but this week I feel like the batteries have been removed and I have been left discarded in the middle of the playroom. I have had two very restless nights on the bounce, a physio session yesterday and I am drained. It isn’t very often I feel this fatigued but I am even struggling to ignore the siren call of my bed presently.

I am wondering if it is a combination of being back on antibiotics again, courtesy of a HS flare up. A mild virus, I have a bit of a cough / sore throat but it really isn’t anything major, more of a mildly irritating tickle but feels like it did in the bad old days when it would go into Bronchitis. Of course being two years smoke free ( I gave up smoking on 6th August 2017 and haven’t touched them since) I had hoped I might avoid a chest infection, especially as I am now taking zinc daily. With the change of the season, the air is getting fresher so my joints have thrown a hissy fit. Every day this week I have spent sat on my heated throw attempting to combat my joint pain with heat rather pain medication. My fingers are really bloody painful (including my thumbs), costochondritis has flared up, my right hip is painful, piriformis syndrome is rearing its ugly head and I keep getting a spasm in the right-hand-side of my back. I feel like I should really just dip myself in a vat of Ultrasound gel and have done with it. Every night I am spending around an hour giving myself an ultrasound treatment on various parts of my body. That in itself is draining but lowering the pain levels. This probably sounds like a huge moan. It isn’t I am just stating the facts. I put on a good show but I am exhausted by it all.

It is deeply frustrating when my only desire is to be creative and I can’t motivate myself to do it or the pain won’t let me sit at my machines for longer than a few moments. I did manage to get a couple of bits done last week. For the first time I made patches out of my embroidery work and attached them to make up bags. I found the pattern on line but adapted it due to increasing the size by 10% and adding zip tabs to give it a better finish. 

I made these two for friends who are both going through an awful time. It is also part of me paying forward after receiving a massive parcel of fabric from a lovely lady called Beverley on Instagram. She has been supportive of my sewing and embroidery from day one – she sells stuff online and her work is amazing. She always is full of praise for my work, which makes me blush as I am so hyper critical. Both bags were made from the fabric she sent me, as will a couple more, that will be Christmas and birthday presents. 

I am itching to get started on working on these items but everything feels like lead. Maybe later on I will start to feel a bit better and I will be able to do some embroidery. I make the patches first, deciding on a design for each person, before then deciding on the fabric within my expanding stash that goes with it best. For the Lurcher bag I chose the blue leaf fabric because it went so nicely with the scarf on the dog. With the fox bag I chose the white and green as I felt it looked like sunlight through leaves and you were peering through the undergrowth and came across the fox. Sounds a bit whimsical but that is exactly how I work and I make no apologies for that. That’s why I get so fed up when I feel so drained that I just can’t work on a project. I know there is plenty of time but there are just so many things I want to do.

When I can’t sew or embroider I spend a lot of my time looking at projects for the future. My whole life revolves around sewing / quilting / embroidery and I love it. I have never felt so creatively fulfilled.  Which is why it is so frustrating when I can’t actively do stuff. I am lucky that I can do it, so I really don’t want this to sound like I am moaning. Although thinking about it I am fully entitled to. I can’t see many of my “well” friends coping with the amount of shit I have had thrown at me over the last 12 years. I have had several of them tell me they couldn’t live like I do and that they would rather top themselves. I think, they believe that is a compliment but all I hear is that they believe the quality of life I have is shit and nothing could be further from the truth. As others have said long before me, “life is what you make it”. You carve out tiny pieces that fulfil you whenever and wherever you can.

I have noticed after the last two Physiotherapy sessions that it is taking me longer to recoup the energy expended by attending. So that on top of everything else is probably what has caused me to be knocked on my arse. I know this state if fatigue is more than likely temporary and I just have to ride it out. I am currently just drained.