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 I know some people have created this fairy tale in their heads that either have withdrawn from society or that Mr Myasthenia Kid doesn’t let me out in the world.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