January

Everyone always says that January is a long month and up until this year I would have agreed with you. For me January is whizzing by at a rate of knots and I don’t “get” why. Nothing in my life is any different than normal and I am not the only one who has said January seems to be rushing past in a blur.

January is a hard month for me emotionally, it contains far too many anniversaries of people whom have passed away, ( and obviously Frankie and Mollie’s passing) lives cut short when they should have had so many more years ahead of them. It is always a battle for me to keep myself from sliding into depression, with its dark mornings and gloomy days. It would be very easy for me to go to bed and just not get out during January. Especially with what is going on in the world currently.

I shall just state for the record this isn’t a “new year, new me ” shite post. I don’t do new years resolutions purely for the fact that January also contains the anniversary of me finally getting the diagnosis of PoTS in 2011 after my first tilt table test. I also first became sick on 5th January 2007. So I don’t hold with the New Year superstitions of not cleaning or doing washing on New Years Day in fear of removing all the good luck from the house. January has always been a shitty month for both of us regardless of what we did or didn’t do.

For some strange reason I have found this January easier to bear, despite the fact my friends and dogs have been on my mind a lot. I still have days where my mood takes a sudden dip or I wake up and have no energy at all despite sleeping well. I seem to be in a better place mentally this year than I have in a long time. Believe me I am not all sunshine and unicorns but I don’t feel that ache in my heart and lack of motivation to do anything at all.

I did make two changes at the start of the year, one was to improve my fitness and the other was to drink less alcohol. I had been drinking a lot more than I ever usually do during 2020, like a lot of people. I never got falling down drunk or anything like that but I noticed how much gin I was getting through, where once upon a time a litre bottle would last me 6 months or more, now it was lasting weeks. I was having probably a maximum of three gins in an evening but they are at home measures rather than pub measures. It was becoming something I needed rather than an occasional tipple. I am not saying that I had a problem or that I am an alcoholic. I just didnt like the way I was feeling the following day, I was feeling nauseous quite a bit first thing in the morning and ( I’ve always had this weird reaction to alcohol ) I was getting a lot of vertigo after drinking the night before. This meant I was spending a lot of time feeling a lot worse than I would normally. It seemed a bit silly that something I  didn’t have to have was now impacting my health so much. 

After seeing someone else on Facebook had signed up to Dry January and was using the app to track their progress I did the exact same thing. I haven’t had a drink since 31st December. The first day was hard, it got to 5pm and I wanted a drink. It had become a habit and as we all know habits can be hard to break. For the first three days the bottle of white wine that was in the fridge was calling my name every time I opened the fridge door. I ignored it’s siren call and have now completed 20 days without alcohol. 

At first I was so completely sure I couldn’t do 24 hours without alcohol that my first goal was to get through the 1st of January without a drink. My second goal was 3 days, my third goal was 10 days. Only now have I signed up to Dry January as I do feel like I can do the 31 days straight without alcohol. There have been moments where I have almost given in to temptation but I haven’t cracked so far. I’m proud of myself getting this far, I don’t think in the whole of 2020 I went this long without alcohol. I am sure my liver is thanking me. I have also noticed that I am not needing my B12 injections so frequently since cutting out the booze. My left leg had started getting pins and needles in it every four or five days. That is my sign that I need B12, as soon as the alcohol stopped my need for B12 so frequently stopped. 

I have noticed a couple of other changes with cutting out the gin, I am sleeping better and waking up ( most of the time ) feeling clearer headed. This morning I woke up and was so convinced it had been Sunday yesterday and today was Monday that I took Monday’s meds instead of Wednesday. But I will blame that on last nights migraine. Today I am feeling fuzzy headed and I know that is just the aftermath of the migraine. I am also fully aware that today is Wednesday and not Monday like I first thought ha ha ha! Also the vertigo that I was experiencing almost daily has reduced enormously, to a couple of times a week. I have it bad this morning as I always do post migraine.

I’m not giving up alcohol, me and alcohol are just having a break for a bit. I have bargained with myself and said I can have a tipple at Easter.

My other goal was to improve my fitness as I was noticing that I was less and less able to do stuff. It was making me feel old before my time. Obviously due to mobility issues I am never going to be a marathon runner or take up disco dancing but I needed to start doing my pilates exercises more as I was having a lot of pain from my  spondylolisthesis where the vertebrae were slipping further forward. Causing me shooting pains down both legs and making it very difficult to do even the simplest of tasks. 

I had read an article about how exercise can make your immune system function better. It is always a worry that if I contracted  Covid that I would get seriously ill . Not through any of my pre-existing conditions, just my bloody luck. Something in the newspaper article worried me as it said high neutrophils ( which my blood tests always tend to show ) means the immune system is out of balance and could make it harder for you to fight off Covid.  I have high neutrophils probably because of the inflammation in my body from arthritis affecting so many joints. Until I read that article it wasn’t something I had ever been overly concerned about. I knew losing weight would take time but exercise would have a quicker result. 

So now I try to exercise every day, either through doing core strengthening floor exercises (usually done on my bed so I don’t get stuck on the floor) I have added in some very light resistance bands to my pilates exercises as it helps stabilise my hip joints and stops me rushing the exercises. I have also started using a recumbent bike to exercise and strengthen my legs. Again my hope in strengthening my legs is to help my back as it will also help build up my glutes which again will protect my back. It is hard work exercising after so many years of not doing anything. I also really noticed how much worse my back had got without regular physio (due to lockdown’s) and without me sticking to my Pliates exercises consistently. 

It was time for me to make a commitment to helping myself a bit because there are things I can do to lessen the pain I am in.

Validation!

The year 2020 can best be compared to  a freshly filled nappy sack ( used diaper bag ), warm but full of shit! It has been one thing after another for me health wise this year and now it appears that I have developed psoriasis on my scalp ( this is where I have the biggest patches ) and on small areas of my limbs.

For years I have been plagued with what I thought was a bad case of dandruff. My scalp has always driven me crazy with it’s itchiness. I can’t go more than 2 days without washing my hair as my scalp seemed to slough off and be covered in a thick crust of skin. I would always avoid scratching my scalp in company or when out of the house due the avalanche of white snow that would fall from it. I would when wearing dark colours be constantly checking my shoulders for signs of snow. I became paranoid that everyone would know my scalp was a mess. I have avoided hairdressers in the past, although I have been working with one for around 7 years, I have much less frequent visits than I would like purely because if my scalp is particularly bad I will avoid it.

In the past when I have been really poorly in hospital and unable to wash my hair, I always develop a crust of skin around my hairline, that is so thick that you can scratch it away ( quite satisfyingly) with your finger nails. This would appear in a matter of days and is one of the reasons why I can’t go any longer than 2 days (unless I am very poorly) without having my hair washed due to the build up of skin and the itchiness it will cause.

Over the years this has been my dirty little secret. I have tried more treatments / shampoo’s than I care to mention – T gel, Polytar, Nizadol, Alphosyl, apple cider vinegar, sugar free diets, juicing. Whilst some of the treatments may reduce the itching they never get rid of the flakes. I was (currently) at my wits end as my scalp had started bleeding at the slightest scratch and the amount of flaking was getting worse. I was always conscious of it and was getting to the point where I was coming around to the idea that I needed to contact the doctor. I have been putting it off for ages due to Covid and feeling that I would be treated like I was being overly vain. 

Last night my hairdresser came over to sort my hair out for Christmas. I was having a half head of highlights with some light brown / dark blonde put through it so that I don’t look like a brassy blonde and so that the regrowth is much less noticeable. As she was putting the foils on Rachel ( yep it gets confusing as she is called Rachel too) said ” Did you know you have psoriasis on your scalp?” I looked at her a bit taken a back and she said “yeah your scalp has got lots of raised plaques on it about the size of a 50p , none of it is infected, it is all really dry, do you get it in the winter?” I almost burst into tears. For years I have believed that I have psoriasis.

I said to Rachel that no I didn’t have a diagnosis of psoriasis, that I have had issues with my scalp since I was a baby and this was something I had long suspected.

When I was a baby I had horrendous cradle cap, as many babies do. My mum has described it to me as like a crust of flaky skin around my hairline. She would treat it with baby cradle cap shampoo but it would just knock it back just a bit. As a small child around primary school (infants) age, I can remember my mum washing my hair in the kitchen sink every Sunday morning and applying a very smelly shampoo that I would have to keep on my head for a while before it could be rinsed off, to rid me off what we still called cradle cap. 


At that age all the girls at school wore their hair in bunches. I longed to have my long blonde hair in bunches and plaits just like Heidi did in the TV series of the same name. My mum gently told me that I couldn’t have my hair in bunches as it would reveal my flaky scalp and I would get picked on. Because it was something I couldn’t see and didn’t understand I was desperately unhappy that I couldn’t be l like all the other little girls in my class. It was bad enough that I was never allowed to have patent leather shoes but sensible Clarke’s. I stuck out like a sore thumb already due to being so tall. I looked like Gulliver visiting Lilliput. Add in the fact that this was the early 1980’s and I was the school’s only vegetarian, not having bunches made me feel even more of an oddball.


I dread to think the amount of money I have spent on trying to attain a flake free scalp. I should have just spoken to the doctors when the 20th shampoo I tried didn’t work. There was one I tried that said you had to remove all jewellery before applying as it would tarnish it. The number of times I forgot and it would turn my silver necklace black. All of them would alleviate the itching to some extent but none of them stopped the blizzard of shoulder snow. I wish I had been brave enough to say something to the doctors instead of feeling ashamed / dirty or that this wasn’t a real medical problem that needed dealt with.


This morning I plucked up the courage to send in an e consult form asking for help with treating my scalp. I have also got spots of psoriasis coming up on my legs and arms however they are small and isolated. As Mr Myasthenia Kid also has psoriasis I have been putting a little of his Dovabet ointment on the bits that come up and that seems to be enough to get them to calm down and disappear. I wonder now though if psoriasis has been the reason why the toe nail on my big toe falls off every two years and grows very weirdly. It isn’t a fungal infection but it has horrendous ridges and pits in it. I have never been able to get a straight answer from doctors but looking at these photos of psoriasis on nails well that is my toe nail on the big toe in my left foot. https://www.healthline.com/health/nail-psoriasis#pictures .


Having a quick look on the internet I came across this really good info graphic which shows the changes to nails due to psoriasis, most of which I have had happen to my finger nails and that one toe nail. It is amazing now the wealth of information that is at our finger tips. https://creakyjoints.org/symptoms/psoriatic-arthritis-nail-changes/


It is a weird feeling when you suddenly get an answer or validation for an issue that you have been suffering from for years. I could have hugged and kissed Rachel last night – but we couldn’t due to Covid! I had a quick look at my scalp this morning and found a couple of the raised plaques that she had been talking about. It also explains why my scalp is always super sensitive after a hairdressing appointment. I have ordered some more shampoo and conditioner that is parabens and sulphate free in the hope this soothes my scalp. I have also cut back on the products that I am using to see if this helps it at all. At the moment my scalp is just driving me crazy the itching is insane. I am doing my best to ignore it I am sure it is only feeling like this due to knowing that it is there.

** update I did an e consult with my doctors surgery on Tuesday, they got back to me on Wednesday and have done me a prescription for some stuff to apply to my scalp for 4 weeks and to let them know how I get on. I also had to send them some photo’s. I was home alone so attempting to get photo’s of ones own scalp is a bit of a challenge. Thankfully I managed to find a couple of bits on the side of my scalp and clipped my hair out of the way to take the photo. I then got a text message back to say yes that is psoriasis. It has only taken 10 years to get this diagnosed.