HRT

Good god I feel old, as of last Thursday night, I started HRT ( Hormone replacement therapy). I was put on it for a number of reasons but the main one was an attempt to get a handle on my migraines that have just spiralled out of control since March this year. Leaving me some weeks having 3 a week. I was feeling permanently exhausted by it all, some of it was the migraine hangover and the rest was the Sumatriptan that although stops the migraine in its tracks leaves me feeling drowsy for the next 24 hours.

I’m not the youngest person to be put on HRT, I know people who have been placed on it since their 30’s due to premature menopause or surgical menopause ( post hysterectomy ) but I am a good 5 years below the national average of the onset of menopause which is 51 in the UK. So whilst I am 46 and amongst the first in my friendship groups to be placed on it, it is making me having to deal with the fact that the first flush of youth is well and truly over. Middle age is upon me and it is making me feel sad. 

The sadness has nothing to do with my fertility being over, that isn’t something that has bothered me. Although I can understand why some women would be upset by this especially those who have entered menopause early before they had the opportunity to have children. I am lucky I don’t feel robbed by it, just relief as my periods were just so painful they would dominate 14 days out of the month. I would get cramps up to 7 days before my period began along with tremendous amounts of water retention, I would have period pain for the whole time I bled and it would be at the same intense level throughout. The pains when I had them were so strong I could time the contractions of my womb ( one of the many reasons why I don’t have children as if periods hurt that much the pain of having a child would kill me, no word of exaggeration). Having periods made me feel like a prisoner in my own body. I had asked repeated doctors to let me have a hysterectomy, all they would ever say was no because I hadn’t had children yet. The best thing that ever happened to me was being put on the contraceptive pill cerazette which stopped my periods completely. I was no longer dictated to by my monthly cycle.

Since 2016 I have endured ever increasing peri-menopausal / menopausal symptoms. I started sweating really heavily at the slightest physical exertion after not really being a sweaty person. I noticed my natural body odour change as well and became paranoid that I smelled, despite Mr Myasthenia Kid and countless friends telling me it wasn’t the case. Then out of no where I was hit with crippling anxiety. I have always been an anxious person but this was off the charts, like nothing I could fully explain. I felt like there was a tight ball of barbed wire in my chest and I carried it with me everywhere. I had a constant feeling of my heart skipping a beat in fear. Due to the level of bereavements we went through in a short period of time I put the ever increasing anxiety levels down to a response to the grief. My life felt like it was spiralling out of control. It wasn’t uncommon for me to wake up at 1-2am in a full blown panic attack with absolutely no idea what I was panicking about. 

I would find myself in a cycle of  very unhealthy catastrophising thought patterns. I never looked for the silver lining only the absolute worse case scenario. I spent the first year of Dembe’s life worrying constantly that he would die. There was no indication that this was going to happen, it was just a constant thought in my mind. I worried about him constantly. The worst thing was I couldn’t share my fear because I was concerned that people would think I was deliberately trying to harm him or that I was just plain weird. It was a very lonely place to be and I feel like I missed out so much of that first year due to this irrational fear. I put my fear down to Travis, our first dog becoming sick at 6 months old and passing away just before his 3rd birthday. I also reasoned out losing Frankie and Mollie in quick succession had just made me hyper-vigilant and that it would pass. I would find myself waking up in the middle of the night just to check he was still breathing.

Carrying that level of anxiety day in, day out is exhausting. Especially when it is yours alone to bear.  That is why I can’t get over the fact that with just a few doses of HRT (4 so far, I am writing this on Monday morning) that ball of barbed wire in my chest has gone. I have lost that feeling of everything being out of my control. My anxiety hasn’t gone completely, I think I will always have some level of anxiety as that is who I am . I would be anxious if I didn’t have anxiety! I am feeling much more relaxed and even Mr Myasthenia Kid has said there is a glow about me, something he hasn’t seen for a very long time. He said the look of worry has gone from my face and I am back to being like the old me.

HRT hasn’t been without side effects, had I known that one of them would be rampant diarrhoea – and I mean the time when it sounds like you have taken a piss out of your ass ( sorry if that is TMI but really I have been writing this blog for 12 years if you are only just offended where have you been?)I would not have started it on Thursday night when I was going to be travelling with Jay and Dembe to look at cars, with at least two 90 minute journeys. Thankfully I woke up at 5am so I could take many doses of imodium ( 8 tablets I ended up taking that day) to stop everything I had eaten form 1973 on-wards pouring out of me. Thankfully after the first day this side effect stopped. I had reached out on social media and asked if anyone else had suffered this side effect and a few people had. I also googled it and found that I wasn’t alone with this symptom. Thankfully it did settle down after Friday and I have been fine since.

After the first dose I immediately felt different – well the next morning. Normally Fridays trip out to buy a car would have had me awake all night and feeling anxious and I felt none of those things. I felt reasonably relaxed and happy. Again another feeling I hadn’t felt in a while, happiness. Whilst I hadn’t been depressed, it was more like a feeling of being low / blue every day, I just felt more in the moment instead of caught up in my head . I even found myself singing which is something I haven’t done a lot of for many years. For a couple of years I have felt like an imposter going through the motions of my life, now I feel like it is me. I am not having to pretend I am happy or that inside that I am not a simmering pot of anxiety and rage. Rage has been another symptom I have suffered from. I could and would just explode over the smallest of things.

I am still crying at the drop of a hat which winds me up no end. I only have to watch a slightly sentimental advert and the tears are rolling down my face. I have got into the Canadian series Heartland ( about a horse whisperer, her family and a horse ranch). I watch it most nights before i go to sleep as it is on Netflix and there are 13 seasons. I haven’t watched an episode yet without crying at something. I seem to be lasting longer before the tears start, I am hoping that as my body gets used to the HRT * which could take up to 12 weeks, these tears will stop.

I am yet to know if the HRT will make any difference to my migraines, I woke up with one on Friday for the first time in ages. Normally I have been having them start in the afternoon with a classic aura. It could take up to 12 weeks for it to reduce  / stop my migraines. It could also not do anything at all, which means I may have to try different types of HRT to find the optimal one. I really am keeping everything crossed that at the very least my migraines are reduced if not stopped as the last 5 months have been very tough with so many days lost to them.

The hot flushes I was having have also reduced in severity since starting HRT 4 days ago. My hot flushes tend to go in cycles, sometimes they are awful every 20 minutes all day every day to the point my clothes are soaked through and I have to go and change. Filled with the paranoia that I am stinking of B.O due to the level of sweating. It got to the point this summer that I gave up drying my hair. There was just no point as the heat from the hairdryer and straightening irons would have me sweat so profusely that I would have to wait an hour to cool down before I could get dressed. I couldn’t apply make up ( on the rare occasions I wore it) as it would just be sliding off my face due to the sweat running down in. When the flushes were at there worst it would leave me feeling dirty and down because I had no control over what was happening to my body despite using supplements such as red clover, sage, black cohosh, royal jelly etc.

This severe sweating cycle would then out of the blue just stop sometimes after months, sometimes after weeks. I would be able to dry my hair and only have to dab my face a few times. I would have possibly two flushes a day and the menopause would be back to feeling manageable. It was the never knowing day to day what the menopause would bring that would leave me feeling stressed.

4 days into HRT and the sweating / hot flushes are reducing massively. I haven’t had to change my t shirt 15 minutes after first putting it on because I had armpit rings – something I have never suffered with even when I was well and would go to the gym. If it stops these or just reduces the hot flushes to the point where a tissue will dab the beads of sweat off my face I can live with that after the summer I have just been through.

Just 4 doses in and I can understand why some women say that HRT is a miracle drug and has given them their lives back. Until I started 4 days ago I really didn’t realise how much of my life had been lost to the menopause over the last few years.

Oh and we did get a car on Friday and the plan is that we will pick it up tomorrow ( Tuesday 25th August 2020).

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!