Thursday 24 September 2020

Turd Cake

 I will be honest very little about my health gets me down. Well not strictly true, the migraine situation ( up to three a week) was pretty trying but thankfully that has settled, plus when I have a CSF leak flare up of symptoms but that is more of a freak out along the lines of what if it doesn't heal and I have to spend the rest of my life in bed ? I don't know if I can do it. The injuries from the road traffic incident are really messing with my mood at the moment and I feel a bit of a flake due to it. I put up with a lot of shit that seems to be continually thrown my way but I am struggling to deal with the constant pins and needles in my left arm / hand along with the burning pain that comes with it. Topped off with a numb left buttock which is the icing on top of the turd cake, I am struggling.

I spent last week feeling really tearful, the physiotherapy session from the week before had done nothing but make everything hurt more. Six weeks after the accident and instead of things improving things are getting worse. The pain is like electric shocks, you never know what movement will prompt the sharp zing of pain radiating either from my neck or my upper back. My left shoulder is grating in the socket. I have had enough, it is as simple as that. The only time I am free from the pins/ needles / burning / numbness is when I am asleep and even then I am being frequently woken up by the pain in my neck. And just when you think things couldn't get worse they do.

On Saturday I had a video call with a private Doctor for an assessment of my injuries following the car accident back in August. I had all my notes written out, a list of my prescription medication printed out, I was all prepared for the "meeting" which I was anticipating to last around 30 mins to an hour. So you can imagine my frustration when I was rushed off the phone in 8 minutes and 22 seconds. I was told that my injuries would take months to heal and that he would organise 8 sessions of physio therapy. Basically as soon as he found out I didn't work, it didn't matter how my injuries were impacting me. I was sat dumbfounded in shock afterwards trying to work out what had just happened. Every time I went to speak I was talked over. He was completely clueless about EDS, so when I say my range of motion is reduced, it doesn't look like it as it has just reduced to a non EDS persons range of motion. You need the input of someone who knows me and has been treating me for years. Yet my whole case could be settled on the basis of this arsehole doctor. I cried. I cried because I felt like I hadn't been heard, I cried because I felt like I hadn't been believed and I cried because yet again I was going to have to fight another battle for a situation that hadn't been caused by me but some stupid twat driving a BT open reach Van and him not paying due care and attention.

I was shocked at how low I was and how easily the tears came. I am not one that dissolves into tears over stuff that is to do with me. I will cry at tv shows etc but I am not one to sit and sob about my life. I made that decision a long time ago and felt that it would be a waste of time and energy. But Saturday I just didn't care. It was just another punch in the gut.

I'm afraid to say I just wallowed a bit Saturday morning. I wrote a very strongly worded email to my solicitor pointing out all the issues i had with my 8 minute and 22 second health appraisal. I really wouldn't mind but that doctor will be being payed hundreds to churn out these assessments over video calls and it appears there is no quality control at all with them. I then was angry, angry that as soon as he realised I was disabled and not part of the work force that my life was some how worth less than other peoples. WTAF??? 

So after Jay had popped home for lunch and I had a bit of a vent to him I decided that I needed to push myself and do something on my embroidery machine. I hadn't touched it all week as I had been feeling like everything I do is shit, I couldn't concentrate and sitting at the machine isn't very comfortable even with extra pain meds, special cushions and hot water bottles. I set myself the target of completing one piece. Within 15 minutes I was feeling much more relaxed and was actually enjoying what I was doing. I ensured I had lots of breaks and pottered about on the long stitch outs. I actually managed to get two blocks done and it was such a mental boost for me. It really cheered me up after spending the last 4 days on the sofa feeling sorry for myself. 

By sitting at the embroidery machine and forcing myself ( it felt like pulling teeth initially) to be creative, I proved to myself that I was good at something and that my life even with this constant nerve pain, was worth something despite the way the doctor had made me feel earlier on that day. I was in pain when I finished, it wasn't easy but I did feel like I had accomplished something. Something other than wasting the afternoon feeling sorry for myself. 

For me being able to be creative is better than any drug, it lifts my heart and fills me with joy. It makes me feel good about myself. So on Sunday I spent some more time at my embroidery machine not because I was forcing myself to but for the first time in ages I wanted to.

These are for some gifts that I am making. Hence why I have started Christmas projects now as everything is taking me such a long time to do as it has to be done at a much slower pace than normal. I have even managed to get some blocks of my spells and potions quilt for Halloween started.

I am lucky that I am a) able to do these pursuits and b) can afford do them. I count my blessings every day but that doesn't mean that everything is wonderful in my life. It just means I have a distraction from the constant nerve pain. Nerve pain which is the icing on the Turd Cake I am currently dealing with.

Thursday 17 September 2020

Setting Boundaries

 I have always believed that conversations are a two way exchange of information, not a situation where one is supposed to sit their passively whilst someone else bombards you with information. Never actually allowing you a chance to say something or if doing it in message form never making you feel like your part of the conversation was read or acknowledged before they bombard you with a series of more short messages so that your phone is continually pinging and your head feels like it will explode. 

When someone treats me like this it is a massive red flag. It has taken me years to identify these red flags and I wanted to share some examples with you so that you know the sort of things to look for. They can be subtle but as a rule of thumb anything that leaves you feeling anxious, guilt ridden or just plain uncomfortable should be listened to. Don't be like me and let this go on and on. Set your boundaries and stick to them.

For example of a red flag,  what reasonable person would attempt to guilt trip you for not getting your husband to do their shopping when we went into lock-down when a) he was not in work as he was in a vulnerable category, so we are having our shopping done by friends b) you live 30 minutes away from them so it isn't a case of just dropping it on their doorstep? In typical Narc style when you offer them solutions such as their local community Facebook groups that have been set up to help people there is a long list of excuses as to why they can't access them. 

You know those conversations that leave you feeling emotionally drained? That you haven't been heard, despite your best efforts you are left feeling guilty when you haven't done anything at all wrong, other than state your boundaries by using the word no. Sound familiar? If so then you have probably been in contact with a narcissist or someone with narcissistic tendencies.

Now not everyone that bombards you with information without allowing you the chance to respond is a narcissist and sometimes conversations are emotionally draining due to the subject matter. I know that I can be guilty of talking too much and too quickly when I haven't had any contact with the outside world other than Mr Myasthenia Kid. But I am not like that in every conversation you have with me, nor am I like it in every message. I'm talking about a very specific kind of person that either a) I seem to attract or b) I have had so much experience with this personality type that I can spot it a mile off. Yet I am still struggling to distance myself from them because I worry that because I have dealt with Narcs before perhaps I "see" those tendencies when they aren't there. Narcs have the ability to make you doubt yourself even when you know 100% that it isn't you, it's them.

The problem with narcissism is that is it a massively under diagnosed disorder, so it is much more common than we are lead to believe. The reason it isn't recognised as much as it should be is  because no one gets diagnosed with something unless they visit a health professional because they believe that something is wrong with them. The issue with narcissists is they truly believe there is nothing wrong with them and it is the rest of the world that is the problem. So why would they ever visit someone to get a diagnosis or fix them?  Plus no two narcissists are the same, they may do similar things from the narcissists play book -  they are always the victim of someone else's behaviour eg jealousy, greed, abuse, poor ability to do their job etc etc Once you have been around a narc or a series of narcs you will notice how things are never ever their fault. They could be caught red handed and they will tell you to your face that it is your fault because you caught them! They never take responsibility for their own actions and their ability to rewrite history is breathtaking.

Confront a narcissist and you will be told that a) they have no clue what you are talking about b) whatever they said or did wasn't meant like that and you should let it go, c) that it was a joke or d) it didn't happen. The default setting is usually that it just didn't happen. Even if you have the evidence in your hand that shows what took place they will tell you that it didn't happen the way you think it did. This is called gas-lighting and is designed to make you question your own ability to recall events and situations. It is a way to keep you constantly off balance so that you never have the chance to question the behaviour of the narc as you are too busy blaming yourself for the events that have transpired.

Confrontation also runs the risk of narcissistic rage which if you have never been exposed to before can be frightening. They will literally lose their shit and be out for revenge by any means. There is nothing so angry as a narcissist who has been exposed, they really can't handle the fact that they aren't quite as superior as they have been making themselves out to be. There is no logic with a narcissist they simply don't believe that you have the same intellectual capacity as them and as I have already said they will deny anything you confront them with and will attempt to change the path of the argument to make it about something they believe you have done and they will end up being the aggrieved party. It is crazy making and that is the way they behave, to have you constantly doubting yourself or making you feel guilty for not doing what they want.

When you read about narcissists online you quite often see the word Grandiose however I would argue that narcissism is a spectrum, some of them do have over blown visions of themselves and expect deference from all that they meet. Others however are more subtle, some will play a game of being better than you in whatever area they like to use to make themselves feel good, so cleverer than you, more attractive than you, more friends than you, more Christian ( insert any religion here), more forgiving than you, sicker than you catch my drift?

 A classic example of a narcissist is the type I call the martyr, they love to offer you help, they will put their own plans on hold and it would appear nothing is too much trouble. Yet behind your back slag you off for asking for help and act like a martyr to anyone who will listen ( another great way of becoming the victim for sympathy).  There are a lot of these Martyr's around, if they have to point out to you all their good works beware! Most people are humble and modest they don't need outside appreciation for doing good, the act is enough.

At the heart of every Narc is a shattered ego, someone who doesn't actually know who they are, lacks empathy or understanding. They play at life adopting personality traits they think will ingratiate themselves with others. They can appear on the outside as thoughtful, kind, caring individuals but essentially it is all a scam. Once they have you in their clutches the facade will drop and you will realise to your cost that nothing you do will ever be good enough. Your needs, will never be met by them as they are far too busy sucking the life out of you.

Narcissists don't inhabit one class or group, look hard enough and you will realise that you have met at least one if not more. In chronic illness groups they will always claim to be sicker than all the other individuals in that group despite their being evidence to the contrary. They claim to be in agony 24/7 yet on their Instagram account the one they forget that you follow they post about their various day trips out or holidays abroad. If they were as sick as they claim to be they wouldn't manage half the stuff they do.For example, I had one tell me when I had my CSF leak ( and was confined to bed for much of the time) that hers was so much worse than mine but she had to get up out of bed as she had kids. What she failed to realise is that with an active / bad CSF leak there is no getting up, the pain is so intense you simply can't get up. If you do you can end up projectile vomiting for hours. Regardless of having kids or not having a CSF Leak is not something you can just switch on and off or pull yourself together from. There is no putting a brave face on a continuing with life as normal with a CSF leak. I am now semi healed from my leak but I still have days where I have leak symptoms. I am lucky many people never get to the point I am at.

Have you ever been in a working / group environment where someone is always giving you orders ( obviously your boss is supposed to give you direction)? That they want you to do all the running around yet they are the only ones capable of presenting all the information that you have researched for them and they will take the credit for. I have known far too many in work and outside work that will churn out idea after idea and will expect everyone else to do all the graft because they are just far too sick / too busy / too important to be getting their hands dirty. When you challenge them on this you are either talked down to or guilt tripped . I don't mind someone who delegates but joins in. I have an issue when someone sets themselves up as an unappointed leader and expects everyone else to do their bidding. As always the narc is the centre of everything, the queen bee, whilst all the worker bees are running around for them. Also if their plan fails it will be due to your lack of effort and nothing at all to do with them. Responsibility just ins't their thing.

They adore being the centre of everything, they lurch from drama to drama. Usually the drama is of their own making but they wont take responsibility for it. They also love creating drama between people, sometimes known as triangulation. So they will make out that they are siding with you against someone else whilst secretly doing the same with the other person. The reason you and the other person fell out is probably to do with something the narc said anyway but by the time you realise this you are in too deep and the drama has become an everyday part of life.

Narcissist also hate being corrected or "shown up" so if you point out what they are saying is factually incorrect or you point out to them that they are asking you to breach company policy / the law, they see this as a personal insult. How dare you question them, how dare you point out they made a mistake. They simply can't cope with their mistakes being pointed out so fragile are they to criticism yet they have no issue at all dishing it out. Most Narcs have never dealt with someone saying no or setting boundaries. Those that have said no or set boundaries, usually do it when first meeting the Narc, when the Narc learns that person won't be manipulated to their way of thinking they are dropped and a new person is adopted. They form friendships ( I use that term lightly as they should be called dictatorships) quickly, over sharing and appearing vulnerable so that you feel sorry for them. Their spouse is abusive, their doctors don't believe they are sick, their relative is abusive to them - again notice the pattern always the victim. It is never just one of these things but usually a whole load of people that are abusive horrible towards them. 

I want to make it clear that yes people can be in abusive relationships, yes doctors can be a nightmare - hello have you not read my blog??? but it just isn't possible that this person is always the victim. If they tell you they have a long history of people ghosting them / dropping them / disappearing from their lives without warning be on your guard. That is a warning sign that I have failed to take notice of previously. Always feeling sorry for the person that they were treated so badly. A person I knew would have these intense friendships with people, they thought this person was the bees knees. Then slowly but surely the complaints about the "friend" would start and then in a puff of smoke the person disappeared from their life, no explanation. I asked them about it once and was fed the line that people always seemed to do it to them. That people were always awful to them.......they were the victim. I accepted what they said on face value and thought poor them. Isn't the world full of really awful people, not realising that those people that had disappeared had headed for the hills as soon as they could, before they were subjected to anymore narcissistic abuse.

I've rambled on for long enough my main point is, do listen to your instincts, if they are telling you that something isn't right then it is a red flag. A word of warning though, when exiting a "relationship" with a narcissist always expect the smear campaign, they just can't help themselves and will make up any old shit to tell their gullible sidekicks. They will accuse you of the most heinous actions, they will tell people you are a thief ( yet their favourite thing to do was borrow your stuff and then never give it back), that you abused them mentally, physically etc that you are an awful human being, they will even make up stuff about your nearest and dearest. 

They will also use their sidekick to try and hoover you back in, either by making excuses for them , "oh they didn't mean to do that it was brain fog", "oh they are really sorry for the way that came across", yet they never actually manage to admit the mistake themselves, they get others to do it for them. The other one like to get their flying monkeys to do is attempt to guilt you back into the relationship " XXX is seriously ill in hospital"/ "XXX is so sad that you didn't wish them a happy birthday"/ " I don't understand why you can't just forgive XXX and get along".  When you refuse to be hoovered back in the narcs lose their shit again because they truly believe they should be able to control everyone. Anyone who isn't under their control is automatically an enemy.

The question to ask yourself is am I a gullible sidekick? No one wants to think of themselves as gullible and I will be kind when it comes to Narcs you will be charmed into believing everything they say. Yet at some point in time something won't sit easy with you. Ask yourself other than telling you something what evidence has the Narc actually provided you with? Having met the other person ( if you have) that they are smearing does what they say and the person you have met match up. Almost always your experience of the person and what the narc says are diametrically opposed. So use your critical thinking and never accept things on face value from anyone. In smear campaigns I have had some pretty awful stuff said about me and my husband and people have swallowed it hook line and sinker. Yet none of my actions or his have ever lent any credence to the lies being told. There is no proof of what the person is saying, yet their puppets accept it. 

Unfortunately the only way to deal with a smear campaign is to rise above it. Don't engage with it, don't lower yourself to their level. If people are stupid enough to swallow the lies being told to them let them carry on. The people that know you and value your friendship will know that what is being said is rubbish. There is zero point in caring about what people that don't really know you think. There will always be people in life that don't like you, what's important is to only care about the ones that do like you. Trying to fight a smear campaign will drive you crazy and will end up making you look mentally unstable playing directly into the Narcs hands. I smile knowing all the bullshit said about me and knowing that they are clueless that I know. 

Know that there is no depth to which they won't sink in a effort to look like the injured party. 

Remember in whatever friendship, relationship you have it is always ok to say no and it is always ok to have boundaries. Anyone who gets upset by that needs to be given a wide berth.

Great article where you can read about Narcs and the disorder in more depth here.

More info here from the Mayo Clinic

Wikipedia article

Good article explaining how they operate

Thursday 10 September 2020

HRT - 2

I have been very public about my journey with menopause and HRT. I wanted the conversation opened up for other women like me in their 40's who had for years been suffering with symptoms but had been continually dismissed by our doctors as being far too young to be in the menopause. Looking back now I can see that I have had menopausal symptoms since my mid thirties, which is shocking really. I had no clue what those symptoms were or that they could be remotely related to the menopause. After all as I far as I was concerned I was still fertile, I was having regular periods. When tested my hormone levels always came back at normal levels until a test in 2015 showed that I had abnormally low LH - Luetenizing Hormone, the hormone needed for releasing eggs from the ovaries. For more information use this link. It makes sense that my LH was out of whack as this was the year my pituitary gland was messed up, I started lactating and was the very start of my CSF Leak. It could be that I was in a temporary state of ovarian failure or it could have been a sign that my ovaries had stopped working for quite some time. I was 42 years old when the results of this test came back and despite all the symptoms I was reporting menopause was laughed at every time I mentioned it. There is a very real need to get this into the conversation so women don't have to go through what I have been through.

Although I have been vocal about the fact I was in menopause / peri menopausal - I'm not officially in the menopause until I have been without a period for a year which will be December 7th 2020 yay! 

I never expected to be criticised or given incorrect information by another female for choosing to alleviate my horrendous menopause symptoms by using HRT. I know I am incredibly lucky that I have the choice of HRT, I know my mum hasn't had that choice being put into a surgically induced menopause in 2018 when her doctors discovered she had ovarian cancer, another 2 acquaintances have breast cancers so can't have HRT as the hormones would fuel the tumour growths both have been placed into the menopause due to this. I also know HRT is a personal choice and I am certainly not advocating that everyone should be taking it. What I am advocating is that women we at least talk about it and arm ourselves with up to date information and not repeat absolute rubbish that was disproved years ago but led to thousands of women being unable to access HRT, with some committing suicide the fall out from their symptoms were so great. Also as women it is extremely important that we understand that no two women's menopause are the same. We need to stop behaving like menopause is an identical experience for all women,  as for those of us who are having a pretty shitty time to be told in effect to get on with it HRT free when the other person has barely noticed their symptoms, is a massive slap in the face and negates our experience and quietens our voices. Well except mine as usual.

We have the same issues with menstruation, those of you lucky enough never to have passed out / vomited due to period pain have no place telling women who have to just suck it up, take some paracetamol and get on with it. Every month my insides would feel like like they were on fire, sometimes this would happen for up to 7 days before hand. I was never a heavy bleeder, but the cramps were horrendous. The pain would be so bad that for the first two days of my period I would feel so sick I could only drink sugary tea or coffee. That would be my food source, because if I ate that meant I would throw up and I couldn't work and throw up. I would have a band of pain that ran from my sternum ( breast bone) all the way around my back down to my mid thighs. My buttocks would ache and I would feel like someone was stabbing me in the vagina with a knife. The only time I have had a pain free period was my very first period at age 11 and when I was on a PCA ( patient controlled anaesthesia) morphine pump after major abdominal surgery. For some reason surgery would always make me have a period even if I had only just finished one and due to having heparin injections it would end up a blood bath. Hospitals are really shit ( or they used to be) at providing sanitary towels, which is fine if you have family nearby who can go buy you some but when you are an hour away from home and you have to beg the staff for sanitary protection it is a bit fucking much. Anyway I digress.

I always thought the menopause for me would be something to rejoice in, it would mean no more periods, no more feeling awful for up to two weeks a month. No more pain levels off the chart and no more uncontrollable rage. I also used to suffer with horrendous pre - menstrual rage. I actually went to the doctors about it once, I explained to the doctor that I had in one of my rages gone to stab my husband with a kitchen knife. Managing to stop myself before I plunged the knife in his back. I have no idea what his crime was but the rage was overwhelming and it scared me. I was met with laughter.....I had just confessed to almost plunging a knife into my husbands back and it was greeted with laughter. I was told to take some evening primrose oil patted on the head and sent on my way. To be fair all my appointments regarding menstruation have ended badly. As a teenager I was repeatedly told that when I had a baby my period pains would get better. When I would pipe up that I didn't want children I would be patted on the head and told I would change my mind. Despite missing school for at least a day most months I couldn't get anyone to take my pain levels seriously. With the doctor laughing at me when I was terrified at what I may do next, I just never really bothered to speak to them again about my issues what was the point? Time after time I had been dismissed and made to feel like I was wasting their time.

So when I started raising the issue of menopause with my doctors and started being being dismissed again due to my age - I was in my early 40's obviously due to EDS I looked a lot younger, well at least 10 years. Medical professionals were still asking me at this point if I had plans for starting a family and would be quite taken aback when I said how old I was. I stopped trying to bring it up after 2 years of constant dismissals, what was the point, the message I was receiving was loud and clear, as a woman I was just expected to get on with it. I started taking herbal supplements red clover, sage, black cohosh, menopause supplements. Nothing really helped. In fact when I stopped my contraceptive pill last December I fully expected to have a period with in 4 weeks and was in shock when it didnt happen. I had always come on within 7 days of stopping the pill before but nothing at all happened this time. Looking back now I couldn't have chosen a worse time to stop it as without the progesterone the relatively mild menopause symptoms ( other than the crippling anxiety ) hit me full force. I spent most of Christmas getting changed as I had soaked through my clothes with my hot flushes. When I say hot flushes it wasn't like 4 a day, 4 a day I could live with. This was one hot flush would start to settle and another would start. My face would be beetroot and running with sweat, my hair was constantly plastered to my scalp, my glasses would steam up on my face and my clothes could be wrung out down to my knickers due to the sweating. Hot flush didn't even remotely describe what I was going through had it been just a little hot flush, as some one tried to tell me a few days ago I would have loved it. 

I was permanently terrified that either a) I would stink of body odour or b) people would be able to see the sweat marks on my clothing. I had the constant feeling of never being clean, as soon as I exited the shower a hot flush would start and that would last several hours. It wasn't one hot flush but a series of hot flushes that would make it pretty much impossible for me to get dressed as my skin would be damp from sweat. I certainly couldn't wear make up or put on facial moisturiser as it would just run off my face with the beads of sweat. After having years of barely sweating I was now, well and truly a sweaty Betty. It didn't matter what I cut from my diet, alcohol, dairy, caffeine the hot flushes didn't stop. I know that alcohol and dairy can make mine worse but cutting them out doesn't stop them. More times than I can count I have had to leave a conversation with a friend and go and stand outside in the freezing cold just to stop the flushes. You can't really do that naked after a shower!

My moods were all over the place, I could never actually feel happy anymore. I had tried an increase in my antidepressants but that just made me constipated. I had this ball of anxiety in my chest that suddenly arrived at the end of March 2018. I had a bad fall in the snow in my back garden and had put my anxiety down to that and the fact I had suffered a number of bereavements one after another. If someone asked me what I was anxious about I couldn't tell them, it wasn't that I didn't know but how do you explain to someone that you are terrified of everything, I mean everything for no apparent reason. My fear / anxiety wasn't rational. I tried hard using CBT, the doctors offered me apps for my phone and told me to contact Cruse the bereavement charity but I knew the anxiety wasn't just to do with the losses. How does someone suddenly become terrified of their own shadow. I was hyper-vigilant in the extreme, I demanded that Jay lock the front door every time he left the house when I was alone. I was terrified of being alone but I was also terrified of being in the outside world.

When we got Dembe I started having the front door locked all the time. Now where I live is very quiet, most people don't have the door locked if they are in the house. Crime does happen but the levels are very low. However I convinced myself that someone was going to break in and steal Dembe from me. Now some may say this was due to losing Frankie and Mollie within 7 days of each other and I am sure some of it was. But I had never had any fears about them being stolen and we had lost Travis our first Weimaraner in tragic circumstances. I spent the nights lying awake listening in case someone was trying to get into out back garden to break in and steal Dembe overnight. This is the first time I have ever admitted one of the irrational things I was terrified of, every aspect of every day was ruled by fear. It wasn't just a case of being a little bit anxious this was all consuming. I spent the first 6 months terrified that I would kill Dembe somehow, not deliberately but I would step on him, sit on him, I would drop one of my tablets and he would find it and eat it basically he would get hurt in my care. Everything felt out of my control and I didn't feel like me anymore. I didn't even know who I was because there was nothing at all left of me other than anger and anxiety. I was left feeling like an impostor trying to fake my way through every day.

So you can imagine my anger when someone tried to tell me that I shouldn't use HRT because it causes cancer and I should just put up with the hot flushes and mood swings. I had tried at this point for three years using a variety of expensive (and cheap) herbs / supplements, dietary changes, light exercise, weight loss to improve my symptoms. Nothing was working and now I was having three migraines a week.

I started getting monthly migraines probably around 5 years ago, as at that point I was on a contraceptive pill that stopped my periods completely or was it the fact that my ovaries were no longer working as 5 years ago would have been 2015, I had no clue that they maybe following a monthly cycle. I tracked them on and off and knew not to book anything social or appointment wise ( if at all possible ) in the window of 18th of the month through to the 22nd of the month as I would wake up with a migraine of varying severity. When I stopped my contraceptive pill in December 2019 the first thing that happened was that my migraines grew in severity, in March I ended up with my memory being wiped for 48 hours following a migraine attack and that wasn't the only time that happened. I saw a doctor at my gp practice who said she would check with the local hospital and see about putting me on sumatriptan and if they wanted to see me as my migraines were now mimicking the symptoms of a TIA ( mini stroke). 

Then Covid hit full force and the lock-down started. So I never heard anything back. My migraines continued then in May they started happening weekly, then twice a week and then three times a week. The longer I went without the progesterone the contraceptive pill had given me the worse they were getting. I was eventually given sumatriptan which was a miracle drug in the fact that it halted the migraines in their tracks but they left me drowsy and the migraines still had a two day recovery time. I was now feeling like I was just existing, I wasn't living. I couldn't make any plans because I didnt know when a migraine would strike. The only saving grace was lock- down as we couldn't go anywhere or do anything anyway.

We had been supposed to go away for three days at the end of July and in June hubby turned to me and said well there is no way that we could have gone away with you the way you are. He didn't mean it nastily he was 100% accurate. There was no point travelling 4 hours for me to experience a migraine in a different city. What would be the point in that. It still took me a further 6 weeks to build up the courage to ask my gp to be put on HRT. 

My mood had plummeted I was actually contemplating suicide on the worst days because I couldn't see the point if this was now going to be my life until the end of my days. I couldn't do the things that brought me joy because I was either having a migraine or recovering from one. When I did manage to do some sewing or embroidery I felt nothing, where as previously I had always really loved the challenge. Even embroidery or sewing would have me in a panic attack something I have always loved. I was terrified I would get it wrong, I would break the machine, I would fail. The worse things got the lower my mood sank. 

By the time we had the car accident I had put the letter in to my gp. Whilst getting over the initial shock of the accident I did a bit of research about HRT and migraines and found that with some people HRT stops migraines in others it reduces their frequency and in a very small percentage it makes it worse. By this time I didn't feel like I had anything to lose. I had joined The menopause support network on Facebook a small private group and although I wasn't incredibly active on it I read a lot of the posts, comments and made my way through the files section. There I found two papers produced by menopause experts about migraines and the menopause as I knew that some doctors may believe that it was contraindicated as I get migraines with auras. I printed those off and then sent them onto my gp, who had contacted me to say she had booked me in for a telephone appointment for about two weeks time.

I had a whole host of other menopause symptoms going on as well, which I could go on and on about but wont. One of the worst was the dry nether regions that led to the skin cracking and bleeding. It was embarrassing and incredibly painful and obviously not something I wanted to shout from the roof tops. I tried all sorts of lotions and potions to stop the dryness but nothing worked. I would have a few good days followed by a week or more of awful days where sitting would just burn, so sitting at the sewing machine / embroidery machine was incredibly painful. What I have written about is literally the tip of the iceberg so you can see how appealing a few little mood swings and hot flushes would have been to me compared to what I have gone through the last three years.

I started HRT 16 days ago, I haven't had a migraine since the second dose of HRT. I have started losing weight instead of constantly gaining from the hypoglycemia caused by the migraines making me demolish mountains of sugary food and what remaining hormones I had left causing me to store everything as fat. The acne that I suddenly started getting over the last few years is subsiding - after not having acne through puberty to suddenly be dealing with bad skin in my 40's has been a tremendous knock to my self confidence. I was always known as having beautiful skin, my chin was just covered in spots and painful cystic acne. I feel calmer, I finally am starting to feel happy again. The anxiety that was strangling the life out of me has lifted. I feel like I can breathe again.

The fact that I am no longer constantly waiting for the next migraine to hit is huge. Jay said on day 3 of HRT he could see what a difference it was already making to me. He said it was like having the old me back. I could already feel the constant anxiety lifting from my chest.

I haven't written this to appease the person that tried to tell me that HRT is carcinogenic (which made me laugh considering they eat red meat and have smoked for years) , they probably won't even read this. I know that I have a slightly increased risk of breast cancer due to starting HRT. I will be checking my breasts on a regular basis and speaking to my gp if I notice any changes. I wasn't writing this as an apology to the same person that told me as soon as I stop taking HRT all my symptoms will come back which is actually incorrect, studies have shown if you gradually stop HRT symptoms won't return or are less likely to. They are more likely to return if you stop HRT and go cold turkey. 

I am writing this for me, HRT is MY CHOICE no one else's. I certainly don't think it is right for everyone but I can't sit by and let women be scared off from it by someone who hasn't done the amount of research I have looking at the pros and cons and how they effect me. Our family doesn't have the BRCA gene, I don't know anyone in the family who has had or died from breast cancer, my mum is in remission from a rare non hereditary ovarian cancer. All this was discussed in great depth with my gp, who told me had I not provided her with the fact sheets on Migraines and HRT she would never have prescribed it for me. HRT is not handed out like sweeties it is harder to get than an antidepressant. I am also writing this to ask others not to spread disinformation, not to negate someone else's experience of menopause or menstruation because yours wasn't like that. 

Everyone must make their own decisions based on the best information available. I can tell you for the last three years I haven't been living, I have barely been existing and if HRT brings me back some quality of life, a life that is already hindered by disability then so be it.

Thursday 3 September 2020

Post bank holiday

As it has been a bank holiday here this week in the UK I have only just remembered that I needed to write a blog post for is Wednesday at 4pm.

Over the bank holiday Jay came down with a virus ( not Covid ) - throat like he had swallowed a packet of razor blades, aching and full of cold and in the spirit of wedded bliss he has given it to me. Whilst he is now well on the road to recovery I am 4 days behind him. So the day where he spent most of it asleep, I am keeping a two year old Labrador occupied whilst he waits for his dad to come back for his dinner break to walk him as due to schedule conflicts / accident not one but two dog walker's have let us down. It is just one of those things and it can't be helped. It is just the day I needed a knackered pup more than most I wont have one and I feel so awful I could just cry!

 I can update you on the car front we have a new set of wheels, which Jay collected last Tuesday. I have been taking HRT since 20th August and haven't had a migraine since taking it. Which feels very strange after having three a week. This is the longest amount of time since May that I have gone without a migraine and that was just 10 days. I dont want to jinx myself but bloody hell, I haven't missed them at all.

I can't say I am surprised that both Jay and I have been hit by a virus with all the stress we have been under sorting out getting a car, dealing with the insurance, solicitors etc. It was going to come out one way or another. The only good thing is that I have lost my appetite which I have to say rarely happens.

Over the bank holiday weekend I got some crochet done and have manged little bits here and there over the weekend. I have to be careful due to the injury to my neck caused by the crash and not upsetting the nerves which make my hand go numb. I have a physio appointment scheduled for next week.