I’m back

Like all holidays, that sabbatical seemed to go alarmingly fast! It seems like 5 minutes ago I wrote and told you I was taking a break, for the first time in forever. Loads has happened 

since I wrote my last blog post back on 24th October. Despite the fact it has only been 3 weeks. Crazy how life goes.

Hubby and I had a good birthday and were spoilt by our friends and family. Due to being unable to get the time off work I spent the afternoon of my birthday with Heather. She brought a load of second hand clothes with her from a local group, where you offer things to the community and in return if you take an item you donate fresh food to the families being helped by the group who are receiving food bank parcels. The group is currently helping around 20 families who through no fault of their own are struggling. In all my life I don’t think I have ever known so many people who are struggling financially or so many people relying on food banks. When I was growing up I had never even heard of a food bank. Yet for some families these days it is the only way they can feed themselves once the rent and bills have been paid. So whilst I had fun with the clothes at the back of my mind were these poor families.

We had a good laugh trying on the clothes, my brain is taking a long time to catch up with the fact that I have lost 4 and a half stone (63lbs) I see smaller size clothes and think well that will never fit and then almost die of shock when I can get it on. Some of the clothes were hideous or just too revealing. But I am so grateful for the stuff I have been able to take from it to tide me over until I get to my target weight. At the moment its jumpers and stuff I can layer up that I need due to my poor temperature regulation and menopausal hot flushes. I am either freezing cold or throwing every item off because I am suddenly dripping with sweat. 

Heather gifted me a wonderful birthday present, which I haven’t stopped using since I unwrapped it. It is a hot water bottle that is long and skinny. It must be over a metre long and about 10-15cm wide. It can take up to two litres of hot water. What I love about it is that I can wrap it around myself. So I can apply heat to my lower back and hips in one go. Where as before this could have only been achieved using three. 

Mr Myasthenia Kid bought me a wool pressing mat to help me with my sewing and embroidery. It means I don’t have to wait for him to be home to get the ironing board out. Any surface can now be turned into an ironing board and it produces the most amazing results. I also got a beginners book on crochet. I have wanted to teach myself for ages and wasn’t expecting anything crochet related until Christmas so it made a lovely surprise. 

I managed to get lots of things made which reduced the panic I had been feeling. I still have a mountain of stuff to do but it is a much more manageable mountain. I was feeling before like I was being suffocated under the list of jobs that needed done which is why I took time away from the blog. I just needed to get rid of the jobs that I could and focus on the stuff that I needed to get done. Some stuff I can post here but the rest I can’t due to them being people’s Christmas presents.

I’m still making my way through lots of stuff but I no longer have to keep pushing myself beyond my limits. I am no longer surviving on painkillers and very little sleep.

We also managed a trip out for a few hours for a walk, somewhere I could take my scooter. Dembe adored going to Haldon Forest. He was spinning around like a kid with excitement.

 

It was so lovely to get out and blow some cobwebs away. I said to Jay in the car on the way home “if you told me at the start of the year that I would be able to feel this happy again ever, I wouldn’t have believed you”. Even when we had Dembe in the beginning I just felt like I was going through the motions. Now I feel like I am living again and want to be present.

I have taught myself to crochet ( how well I have no clue) I started on the 2nd November ( badly) and found some videos to help me. My hands have been fine up until today, the base of my thumbs are killing me this morning and my fingers are really stiff. I have managed to make myself a snood / infinity scarf from a yarn tea cake ( huge ball of variegated yarn ) which I finished last night and I am also working on a Christmas blanket.

 

The pattern on my snood is almost like one called vintage shells. So it is raised up and not flat, I made a lot of mistakes, mainly counting – thanks dyscalculia  but I am incredibly proud as considering I hadn’t even picked up a crochet hook until 2nd November 2019 , I think I have done well.

I’ve had two appointments, the eye hospital where they were incredibly pleased with how well my eyes are doing with these new drops. I still have the odd evening where I forget to apply them because I have fallen asleep but on the whole I do remember. I had the dentist last week and as I thought I need a filling so that will be happening on Tuesday next week. I am trying to keep that at the back of my mind. Tomorrow I have an ultrasound on my neck to check out the lump only I seem to be able to feel. It is non stop fun here.

We are back at dog training again. Dembe loves it there and cries with excitement as he knows where he is going on a Tuesday evening. We have also started dog agility training for fun, our first lesson was on Sunday. Dembe did incredibly well, his obedience training has really paid off as he was by miles one of the best behaved there, even though he was sick – probably because he had been swimming in the sea before we went. Yes my baby had swam in the sea!

This Saturday is Dembe’s first birthday! Can you believe it? It is crazy as we still see him as our tiny pup. He won’t be fully grown for another 12 months but I think he will always be our dinky dot.

And yes I am knackered and in pain from all this going out. I have to try to pace myself and get some down time in between excursions but unfortunately that isn’t always possible. I am learning to be kinder to myself and not see rest days as a failure or lack of achievement.

Life Laundry – moving on.

Me and Travis

 

I don’t know what it is about October but it seems to be a catalyst for me to have a look at my life and change things. Remove those things that are causing me unhappiness / hurt. To assert myself and decide that those who do not treat me with respect will no longer have that option. I have no idea what makes me so brave in October, maybe it is because it is my birthday the following month? Is it because I don’t want another year of feeling unhappy, unworthy, stressed out by people or things or events? Maybe I just don’t want another birthday where I compromise and don’t put myself and my happiness first?  October as I have written about before is a month of sadness for me, even more so this year as it is full of anniversaries now of dogs and people I have lost. 

First it is my Grans birthday, I miss her more than I imagined I would. That may sound strange but for much of my childhood she was someone I spoke to on the phone and perhaps saw twice a year as she lived at the other end of the country. I stupidly believed that life would continue on as normal when the time came but I have to admit there have been so many occasions that I have gone to ring her and realised that she is no longer here. She would have loved Dembe, she loved dogs and told me on more than one occasion that if she had owned Buster ( her dog ) first she would never have had children. I miss her sense of humour and Jamie’s face when he tried to speak to her on the phone but struggled due to her Aberdonian accent.

The following day it would have been the babies – Frankie’s and Willow’s 13th birthday. I wasn’t really conscious that day due to the hemiplegic migraine I came down with. I knew it was coming and I was feeling sad so I do wonder if both those anniversaries triggered or played a part in triggering the migraine. It wasn’t something either of us was talking about it was the elephant in the room. Plus that birthday is shared by our niece who was celebrating her 30th birthday which left us feeling ancient. She was just 8 years old when I met Jamie. 

Today 16th October Dembe celebrates his 11 month birthday. He has celebrated in style this morning by having his very first swim in a pond on the common. He has been really funny about water outside of the home, he leaps over or avoids puddles at all costs. He would barely get his feet wet by paddling in ponds when very small and ran away from the sea when we took him down the beach.  So to hear he has had a swim is really funny. Unfortunately Jay thought he had videoed the event on his phone but when he came back to show me, he had taken about 1 seconds worth of footage. It’s not the end of the world Dembe will probably now be a regular swimmer and Jay will take better footage. 

I’m glad that it is only this year that we count the months of Dembe’s age. As our first dog Travis passed away on 17th October 2006, 13 years ago and in all those years there is not a day that goes by when he doesn’t pop into my head. Of course I know that the chances are that he would have passed away by now but to lose a dog before his 3rd birthday is a unique kind of hurt. When you get a puppy you expect to have at least 10 good years with them. Believe me those ten years fly by. If you get longer, which we have been incredibly lucky to do with Mollie ( Travis’ sister), Frankie and Willow, (Mollies children), the loss isn’t so hard to bear. Its tough believe me especially losing Frankie and Mollie within 7 days of each other. I have said it before and I shall say it again, I thought I would drop dead from the pain of it all. However the pain you feel when they don’t reach that milestone of ten years is a pain like no other. I don’t think I will ever be able to say that the pain has truly gone.

October 25th marks Travis’ birthday, we first saw him when he was three days old. At that point we had no idea which pup would be our boy but his name was already chosen and we were so excited already that we were having problems sleeping. It seemed such a grown up thing to be doing, even though we were both 29! Three days after his birth on a Tuesday we moved into our home and have been here ever since. I can’t believe it has been 16 years already, it still feels like it was just a few years ago. But the little boy two doors down is now coming up for 21 and works and the same place hubby does.

There doesn’t seem to be a week in October that doesn’t hold a significant anniversary. For years I always used to hate October, I would start to feel down the minute the clock struck midnight on October 1st. I would just feel sadder and sadder until the 17th and then I would spend that day blubbering on and off, trying to deal with the overwhelming grief that I felt over losing Travis. Some years are easier than others. Last year it was a terrible day, I sat on the sofa all day crying being comforted by Frankie not realising how little time I had left with him. This year it doesn’t feel so bad. Probably because we have our little ray of sunshine Dembe to keep us on our toes. He is such a happy dog it is pretty impossible to stay sad for more than a few moments as he will do something that will either melt your heart or make you dissolve into fits of laughter. I also think after going through that double loss at the start of the year all other grief / pain pales into insignificance.

Whilst October has for many years been a sad month for me, it also has become a significant milestone for my friendships. I am an extremely loyal friend who will fight to the death for you. I am the place you run to when you need help or comfort. Wrongly I put you before me and sometimes individuals take advantage of this and abuse my friendship. I don’t deliberately ever plan to sit and take stock of my friendships at this point in the year. It seems to be something that happens. I think it is because with my birthday the following month I think to myself “would I want to spend my birthday with this person?” Would I feel comfortable accepting a gift from them knowing how I feel about them?” I normally just look at the people I have been moaning to Mr Myasthenia Kid. He will tell me quite honestly if this is a conversation we have had many times before. He will ask me “if next year will we be having the same discussion?” Some years I do nothing, I soldier on determined to make the best of things as due to my health conditions friends who come and see me are in short supply. I do have wonderful friends on Instagram and Facebook but sometimes you need to actually speak to someone, share physical space with them. If it has got to the point where I don’t want to spend time with a person and would rather spend days on end alone then I know it is time to move on. Be it a friendship of two years or twenty. I have no desire to flog a dead horse. I won’t beg, I won’t demand, I just leave and move on with my life. I have done it before, I will probably do it many times.

I don’t expect much from friendship, I certainly don’t expect to be the centre of your universe, we all have our own lives and all the demands placed on them. I do expect to be more than an afterthought. I do expect manners, loyalty and respect. I also like communication, conversation that is two way. I will hold my hand up and admit I can be crap at remembering to message people but I do make an effort for those who I consider in my  close circle. I will always be there for my friends like they are for me. 

To be fair it’s not just my friendships that have come under scrutiny in this life laundry. I have done a lot of sorting out of clothes, belongings etc Donating a lot to charity as both hubby and I are on a diet and so much of our clothing has become tent like. I have been taking a look at each room and trying to reduce the clutter. It seems again to be a pattern of mine in October! probably because I want the house looking nice for our birthdays or Christmas.

As a friend told me its Life Laundry, as in it’s a spring clean of relationships. You get rid of the crap and the unnecessary. As she said “it’s tough but necessary” and she is right. You shouldn’t cling to things that no longer make you happy.  

I already feel so much happier and uncluttered. Even though there is a huge anniversary for me tomorrow I am not facing it with the usual dread.  It is time to move on.

Frankie

 

Mollie and Willow

 

Gran & me

Recovery is dragging

I wrote last week about the consequences of going out and I clearly didn’t have a clue how bad things would be as I am still suffering after my day trip. I think maybe it is just rotten timing that ever since I have been feeling very tired and run down. This last Monday I ended up with a hideous migraine that knocked me flat on my back for over 12 hours and had Mr Myasthenia Kid have to come home from work to look after me. I am glad I am out the other side of that but it has shocked me how battered and bruised I am still feeling for having a few hours out of the house.

I am guessing having a solid six hour block of socialising, driving a scooter and having to use a lot of brain / muscle power probably wasn’t the best idea. The longest I am normally out for is probably 90 minutes at an absolute push and that will leave me more exhausted for normal for up to two days after. My days when I don’t leave the house are in cycles of rest and activity. I have to pace myself or I end up paying for it. It hasn’t helped that there have been appointments that I have been unable to not attend – ringing up and explaining to the receptionist that you need to re-book because you are shattered never goes down well. There isn’t really a word in the English language that accurately conveys the level of exhaustion because we overuse words like fatigue, shattered, tired etc. For me it gets to the point where I can feel like I am having an out if body experience or that I am dreadfully hungover combined with feeling so utterly exhausted it can be really hard to motivate myself to move. 

I have been on my embroidery machine and sewing machine a lot as I am making Christmas gifts for friends and family. I know it is only October but I get panicky if things aren’t made and then I start to feel stressed which means I no longer enjoy making the items. At the moment I have been limited to an hour or two a day, which doesn’t help me get loads done but it is the longest I can sit without the pain becoming so intense that I have to lie down the rest of the day or concentrate for. Obviously on the embroidery machine when it is stitching out I don’t have to concentrate on anything but I do need to be switched on enough to know what step comes next as for the first time I have been using the embroidery machine to do applique and I am really enjoying it.

I know I should have taken it easier last week but even after 12 years I think I can push it and there will be no consequences. I never ever learn. Maybe I simply refuse to.

This week my body has just thrown a hissy fit and ensured that I can’t carry on ignoring it when it sends out distress signals. Every bloody condition I have is flaring out of nowhere – Hidradenitis Suppurativa two abscesses after at least a month to 6 weeks without anything, Arthritis hands as stiff as can be, Nerve Pain left leg is burning which it hasn’t done in years, Tinnitus (so loud I am struggling to hear anything else) Migraine and now a headache every day since, nausea, IBS, adhesion pain, Muscle Spasms in my back and feet you can always guarantee will make me swear like a sailor literally everything is kicking off at the moment. I always find pain adds considerably to the fatigue. 

This isn’t a woe is me post or an attempt for sympathy, I am just explaining how things are at the moment and why at the moment I am struggling to come up with dynamic or scintillating posts. I am finding it hard enough to follow a conversation let alone put an intelligent blog post into words.

I do count my blessings though, Dembe is my hero. On Monday when I was so sick with my migraine he wouldn’t leave my side at all. I thank my lucky stars I have him as even on the days when I am really suffering and thank goodness they are few and far between he is stuck to me like glue and always makes me smile.

So I promise to attempt to be kinder to myself over the next week and get back on an even keel.

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!

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.