Lock down again?

So it seems we are looking down the barrel of another lock down here in England ( Scotland, Wales and Northern Ireland have devolved governments so make their own decisions ). Not that the first lock down made much difference to my life other than having Mr Myasthenia Kid home with me for 7 weeks whilst he was shielding as he is at higher risk from Covid than me. People don’t seem to understand that I only leave the house for dog training on a Tuesday night or going out in the car and staying in it whilst Jay walks Dembe. I only shop online, I actually can’t remember the last time I went food shopping or clothes shopping if I am honest. So lock down changes very little for me.

Mr Myasthenia Kid is classed as a key worker with him being in retail, so even if we do head into a stricter “circuit breaker” ( who is paid to come up with this shit?) lock down of two weeks the only thing that will change is that I won’t go to dog training for 2 weeks. I know many people in the chronic illness world whose lives are identical to mine or worse,  a lock down isn’t something we fear, getting Covid-19 and being assessed as not worth saving due to ventilators not being available is.

It seems that Covid has already made it’s presence felt again in my sleepy little town. During the first wave we were aware that there were many people coming down with it although I wasn’t aware of any deaths ( that doesn’t mean that there weren’t) . Yesterday the gossip at Mr Myasthenia Kids work place was that someone had tested positive at a local gym. There were now a few people having to get tests and self isolate. Jay joked as it was a gym and he is so unfit as are many of his friends it was highly unlikely that he had come into contact with them. It doesn’t stop me panicking though. 

His job in retail put’s him at higher risk, just from the sheer volume of customers coming through the door and number of staff. They have already had staff members come into work with Covid symptoms, despite all the government infomercials, news programmes and his work place carrying out regular briefings telling staff what to do. It makes me so cross that people have done this especially when there is no reason to, his workplace have been excellent in ensuring staff members do not lose pay if having to isolate or if they have a positive Covid test. 

He along with his colleagues are also at risk from those customers who should be self isolating due to being in contact with a Covid positive person or having Covid themselves who for whatever reason decide that they have to come shopping. I know some people don’t have a choice, they are a single parent, live on their own and just don’t have anyone who can help them out in an emergency. During the first lock down there was plenty of support available for people who had no one to help them out, now however people seem to be under the impression that the danger has passed and no one is isolating. Despite the fact the city next to us is a Covid hot spot due to the number of university students and staff who are having positive Covid tests.

Please don’t get me started on the Covid deniers or the ones that insist that it is no worse than flu or that just a tiny amount of people get it. I help admin a group on Facebook for people with PoTS ( postural orthostatic tachycardia syndrome ) / Dysautonomia and we have had a sudden influx of people who are suffering from what is currently called Long Covid / Covid Long Haulers.At one point last month we were having at least 5 requests a day from people who had developed PoTs post Covid. We normally get 5 to 8 requests a day to join, so it was crazy that we had so many people turning to us for help as they were getting nowhere with their own Gp’s. 

Long Covid sufferers tend to be  people who were fit and well before getting Covid. When they had Covid they were poorly but not poorly enough to be hospitalised however instead of getting better as they and everyone else expected they have gone on to develop a whole host of strange symptoms. Many of them have developed PoTS or other Dysautonomia symptoms. Their lives have been changed forever due to these symptoms and apart from the occasional newpaper article or short segment on TV or radio very little is being said about these patients whose bodies have been ravaged by Covid.

There has been talk in Parliament that the government / NHS will set up clinics for Long Covid sufferers to help them. In some areas these have been implemented but the majority of the country has been pretty slow. Of course this is all very galling for those of us who have been left with no consultant at all whilst CCG’s & hospital trusts hold pissing battles over who is allowed into their area’s for treatment. Since June I have had no consultant to over see my treatment for PoTS/ severe autonomic nervous system dysfunction, the CCG where my consultant worked has banned him seeing anyone outside that city’s postcode. The hospital nearest me, has no consultant for PoTS as the last consultant retired. The story is similar up and down the country with many CCG’s and hospitals refusing to fund PoTS clinics stating that it is a condition that can be managed in primary care / general practice, yet the majority of the medications for PoTS are Consultant Prescribing only. So if you have no consultant you may not get medications like Ivabradine / Midodrine / Pyridostigmine the latter being an off label medication, it is primarily used to treat Myasthenia Gravis. 

So we now have a situation where PoTS clinics are desperately needed up and down the country ( because those still in operation are buried under new referrals and existing patients) and the hospital trusts and CCG’s have been closing them down or refusing to replace consultants that have retired. It is a perfect storm. And predictably it is leading to bad feeling in PoTS groups, where people believe that they have suffered for years, are still suffering and are struggling to be referred to a Consultant yet those with long Covid are having the red carpet rolled out for them. The animosity isn’t against the long Covid sufferers but the decision makers who have decided these are more “worthy” than them. Personally I see it as an economic / ideological move, if we have thousands of people now economically dependent on the state for benefits, lots of people that have previously never experienced this awful system you have an issue that you may lose your voter base. Some people who voted for this current shower of shite are going to have a rude awakening when they find out living on benefits means living in poverty and not the lives shown in the usual Government propaganda. God, I must be getting old to be so cynical. 

It isn’t hard to see why some PoTS patients are upset that it would appear long Covid sufferers are being taken more seriously than they are. Personally I am happy with whatever brings PoTS to national attention but I do want the same facilities that are being offered to Long Covid patients to all PoTS patients, many who have had to battle for years for a diagnosis. Something good has to come from this surely?

So we wait whilst the government makes up it’s mind on whether we are heading to another lock down or not.

Apologies for the blog post doubling up there. I have no idea what happened.

HRT 7 weeks in

 I have now been on HRT for around 7 weeks and things keep improving for me on the whole. I am constantly amazed at how many parts of my body were effected by the fluctuation of hormones. I am so grateful that I didn’t have to battle my doctor to be put on HRT. I can honestly say the last three years have been utterly miserable with all the symptoms I have been suffering that just went crazy once I stopped taking the contraceptive pill back in December 2019.

My main reason for starting HRT was to see if it would stop or reduce the migraines that had increased from one a month when on the pill to 3 a week when I was no longer taking it. The difference has been remarkable. I have had a couple of “migraines” without aura’s but they haven’t been as intense as my pre HRT ones and the Sumatriptan do knock them on the head ( pardon the pun ) really quickly. Migraines now are something I can live with and not something I need to be ruled by, I couldn’t make plans without having to bring my migraine grab bag with me. Even if I was post migraine I was suffering from the after effects, so that it meant I only had one day a week where I felt like I was fully functional or at least functioning at my normal pre coming off the pill level.

The anxiety I suffer with has massively reduced, I still have the odd panic but it is nowhere near the totally paralysing fear I was dealing with since 2017. I have noticed a massive improvement in my overall mood as well. I hadn’t listened to music, either on the radio or by putting a CD on since Frankie passed away on 29th December 2018. I was listening to a vinyl record when he had his neurological even that let to us making that awful decision that every pet owner knows and wishes would never happen. It wasn’t a conscious decision not to play music, I would sing along to music whenever Mr Myasthenia Kid played music videos on the TV but to actually go and put music on or listen to it, just the once or twice when I found some music I really loved. But then after a while the desire to listen went away again.

A massive indicator of my mood has always been my desire to listen to music, I am not a one band or one genre only kind of person. I love pop music so you will hear me singing my heart out to anything by Katie Perry or Brittany Spears. I love the bands U2, Travis, Cold Play, Radio Head, Snow Patrol and James. I like some of the metal and rap that Jay plays, I also like opera and classical music. So to not sing or bop along to music is quite odd for me and I didn’t realise what a long time it had been since I really listened to music by choice not just because I happened to be in the room when it came on. Music was a huge part of my teenage years, again I had very eclectic tastes but I seemed to have lost that in the last few years. Now everyday I have music on, I tend to listen to  Absolute 80’s . I really love the music from my youth and will sing along to my hearts content. I am quite shocked by the difference HRT has made to my mental state and that I have got some joy back and that things don’t seem so bleak and overwhelming as they did previously. 

I just wish when I had been to the doctors in 2017,2018, 2019 about my anxiety and mood they hadn’t just increased my antidepressants, yes I had been through some pretty awful trauma but the anxiety and low moods were so much more than that. I had no clue that depression and anxiety could be linked to the menopause. I don’t think many women do, so how many of us are being given antidepressants which are an absolute ballache to come off, when it is in fact our hormones that are causing the issue. It is also sad that on all those occasions I saw female doctors and whilst they were sympathetic and understanding whilst I spent the majority of the appointment in tears none of them thought that maybe what I needed was HRT. Now at some point in the future I will be looking to reduce my antidepressant, which is also probably behind my weight gain. Deep Joy as I have been through the experience of reducing antidepressants before and it is an utterly horrific experience. No one is told how awful coming off these meds are when they are prescribed them. Yet HRT comes with a warnings list as long as your arm.

Another symptom that I had no clue could be caused by the menopause was dry skin. My skin has been terribly dry for several years and no moisturiser would work as it would sink in and disappear. My physiotherapist used to say whenever I had an appointment she couldn’t get over how dry my skin was, making me feel a little self conscious because it wasn’t anything that I could do about it as nothing worked. I didn’t realise until  very recently that this could be another symptom. But then again I didn’t know acne could also be a symptom, for the last few years I have had bouts of cystic acne, pimples all on my chin. Having not really suffered with acne as a teenager I have found the bad skin really difficult to deal with. I would end up whenever I left the house having to at the very least cover my spots with concealer and powder, even if I knew I wasn’t seeing anyone I knew. If I was seeing people I did know that meant a full face of makeup and praying that the livid purple cystic acne lumps would break free of their concealer prison whilst I was out. I am not massively vain, you kind of lose your dignity and your vanity when you are chronically sick but acne in my 40’s really did a number on my self confidence. It wasn’t just the fact it was painful it was also the fact that nothing I did seemed to help. I took vitamin B5 for a year….nope, I changed skincare regimes to Tropic Skincare and whilst that did reduce the number of outbreaks and redness it didn’t get rid of the acne completely. I feel awful for having my self confidence destroyed by having a max of 4 spots on my chin at any one time but it did and I won’t apologise for it.

Before I started HRT I had noticed I was losing a lot of hair, when it was being brushed or dried. Whilst I realise losing hair everyday is pretty normal, this was beyond normal, my legs would be covered in hair when I finished sorting my hair out for the day ( I tend to lean forward whilst sat on the bed when my hair is being done) . It was also obvious when Jay had hoovered by bedroom when it was becoming a close contest between Dembe and I whose hair he had picked up the most of!  I practised cognitive dissonance with the hair loss, I knew it was happening but I told no one. I came up with excuses like I hadn’t conditioned it enough, my hair was over processed due to straightening irons. All of which I knew was untrue. It was only when my hairdresser mentioned that  my hair line around my face had become considerably thinner that I had to say that I had noticed that my hair had been falling out. For my hairdresser to notice when she see’s me so irregularly it was a shock that I had lost that much hair. I am very lucky I have fine hair but an awful lot of it. After the first week or so of HRT I noticed that I wasn’t shedding as much hair, I was back to normal amounts now rather than handfuls. I have suffered hair loss previously when I was put on the medication Lamotrigine by my neurologist back in 2009-2010. I was putting my hand through my hair and handfuls were coming away. It is a rare side effect of the medication which made me come off it, plus I didn’t believe the diagnosis he had given me to put me on the medication.

On the whole HRT has been a positive experience, the only thing that came as a bit of a shock was getting a period two weeks ago out of the blue with no warning. Now just to remind people if you have not had a period for a year ( and you are in the menopause ) and you suddenly have a bleed or what you think is a period please get it checked out. Bleeding can be a sign of cancer so it is important you are properly checked over. I hadn’t gone a year without a period, I would have officially in the menopause on 7th December but that surprise visitor has thrown a spanner in the works. Thankfully due to the Facebook group I was in I knew that HRT could trigger the return of periods…deep joy. I just wasn’t expecting it as I hadn’t had my usual symptoms other than a 7lb weight gain overnight which was my usual water retention ( always has been between 5-7lbs) and a massive craving fro chocolate that I couldn’t work out why.

Pain wise it wasn’t too bad, it was uncomfortable but not enough to stop me getting on with pottering about. It was incredibly weird just because I hadn’t actually had a period for nearly 5 years!

I was told by my doctor when she prescribed HRT that it would take up to 12 weeks for it to reach it’s full effect so I am more than half way in and the improvements in mood, skin, hair loss have been mind blowing. I get maybe one hot flush a day now and I don’t have to change my clothes when it happens. I certainly don’t have to stand outside in the cold for five minutes waiting for the heat to subside – no fun at all during the heat wave as there was nowhere for me to go that was cool. I am also sleeping better as my sleep isn’t being interrupted by hourly hot flushes where I am drenched in sweat. However the thing I am most grateful for is the reduction in frequency and severity of my migraines. I didn’t realise how low they had made me feel and how I just felt like I was existing rather than living.

I am fully aware that menopause is an individual experience and whilst some people have positive experiences of HRT others can have negative experiences. I know I have been very lucky to have so many improvements with the first dosing level I have been given. To take HRT or not is an individuals choice and I am not pushing it on anyone just sharing my experience of menopause and HRT.