Monday, 16 April 2018



I had a few different posts I wanted to write today originally but then last night happened and it sparked this blog post instead. Hope that's okay. I just wana get it out before the feeling passes. See, last night I just got seriously fed up. Specifically, fed up with having to take care of myself and maintain my health. I know that might be confusing to some of who are lucky enough to experience great health and no serious health issues so I'll break it down for you...

Since first becoming ill about 3 and a half years ago now I often get really fed up of being unwell. I get frustrated at the things I cant do anymore, angry that this is happening to me and sad that I often don't see how it will improve. I know everyone can understand those thoughts and feelings because it makes sense to feel negatively about having a incurable disease. But last night was different, I felt something new. For some background and context, I had an appointment with my dermatologist last week. It was awful, yet another useless doctor (thats another post for another day) but I left with a prescription for 2 new items that would now become my scalp problems/hair loss treatment. Last night I went to use it for the first time...i know...why a week later...the useless doctor gave me the prescription as one i could only get from the hospital and it had closed...bla bla...yeah I'll write up a post on bad doctors like him another time for sure! Anyways, I couldn't do it. I couldn't use it. 

I read the intructions on both bottles that he had prescribed. Both were incredibly vague and kept repeating that I should use however my doctor directed me to. Except he didnt really give me any directions and the one sentence he did say about it totally contradicted everything the bottles said. For example, he told me to use bottle A then wash off with bottle B whilst the bottles (and everything I could find online) stated that they should be used the other way around. Both also constantly repeat that a very specific amount should be used as it is very potent/dangerous and can make me really ill if i use too much and yes, you guessed it! I wasn't told how much to use by him. This then lead me to sitting there for an hour trying to find as much info online as possible about the ways in which to use them for my conditions. Oh and surprise! The awful doctor never even checked my scalp so alot of it is guess work on my part but hey whats new?!

I got increasingly frustrated and annoyed at how much time this was taking up. Yes, alot of you will say well just call the doctor and ask him to clarify and of course, I know to do that but when you are in a different hospital every week for 3 years and 90% of the doctors you see are vague and rude and awful and useless, thats alot of homework i end up doing in order to treat my problems at home. It's exhuasting! And shock! I am not qualified! I don't understand alot of the phrases used or terminology. I don't know what i can and cant use together out of the million of different treatments i am on. I am not a Doctor. So, I get freaked out and I get disheartened and I end up lost and confused and it is all overwhelming. As if having all of these health issues wasnt enough without having to do all of the doctors work on top of it.

Ok so back to last night. After researching I decided it made no sense to use it last night. I would wake up, use the scalp treatment in the morning and then wash it off with the special shampoo stuff after a couple hours and then use the scalp treatment again before bed. This would start the cycle. Treatment all over my scalp once a day and then wash my hair as normal every few days with the special shampoo stuff. Fine. I had it figured out. But now I am in a terrible mood. I am so exhausted already by my Lupus and chronic migraines and chronic rhinitis and sinusitis that I honestly dont have the energy to do all of this every time I get a new treatment prescribed to me. But i have to. I don't have a choice. And this is what I meant at the start of this post. Last night I wasnt fed up of my illnesses, I was fed up of all of the work and effort it takes to fend them off and keep them at bay all day every day. I miss being "normal".

I hate to use the word normal in that way because we are all still normal people even with our ailments but its just how i felt last night. If you think about it the average healthy person with no illnesses or health issues or diseases does what to maintain their health each day? Gets a good nights sleep? Takes vitamins? Drinks water? Ok, I have to do all of those things too whilst also:
-taking 3 tablets a day to prevent severe migraines
-take 2 tablets a day for my rhinitis
-use a nasal spray every day for my rhinitis
-mix up laxatives with water every day just to go to the loo like a "normal" person and this could be anywhere between twice and eight times a day.
-take 2 tablets a day for my Lupus SLE
-take vitamin D because as someone with Lupus I have to avoid the sun at all costs
-avoid the sun at all costs
-use suncream every day 
-wear hats if the sun is out
-take iron tablets to stop my hair from falling out in big clumps- twice a day
-take 2 tablets for acid reflux disease
-take the strongest pain killers when i need them
-take steroids if im in a flare up
-take 3 muscle relaxants a day at the moment because I pulled something in my neck and cant turn my head
-exercise and stretch gently every day. But not too much that it will cause a flare.
-go to a sleep clinic for my insomnia, parasomnia and restless leg syndrome.
-use a scalp treatement every day
-wash my hair with special shampoo every time for weeks on end.

And I am sure I am missing things. And it's not even as easy as that sounds you know?! The laxatives taste like sick. The painkillers make me feel drunk and dizzy. The muscle relaxants make me sleepy and drowsy. The nasal spray hurts. I am sick of smelling like suncream. Hats dont go with every outfit. The iron tablets make you consipated. Steroids are awful. And to add to that the new scalp treatment burns my hands, stinks of rancid vodka and makes my hair look gross and the special shampoo smells so putrid I have to shower with the window wide open otherwise it chokes me. It stinks of petrol and old spice and burning and, well, it says it is coal tar so like am I even surprised?! So now I'm walking around smelling like tar, suncream and vodka. WOW its a good job I have a sense of humour eh?!

I don't mean for this post to be a moan either. I am actually just trying to let healthy people know that living with the symptoms of our illnesses is only the tip of the iceberg when you are living as a sick person. And as a healthy person lets say you forget to take your vitamins one day or drink enough water or something ok so you might feel rough for one day as an extreme example. If I don't do those things to control my illnesses I can pick from a lovely bingo sheet of-
-Lupus damaging my organs
-my hair falling out in huge clumps and never growing back
-my skin being permanently burnt with lesions 
-not being able to go to the loo for literally like 2 weeks
-not being able to walk
-my scalp bleeding
-choking on acid that is working its way back up my throat
-my airways closing up and not being able to breath

So, you see it really isnt a case of oh if its unpleasent just dont do it, for me. And that is what I got fed up of.

I would love to live a day where I didnt NEED to do one single thing to maintain my health or prevent serious health complications. I cant even remember what it was like to live that way, honestly. So i got fed up. I had had enough of having this long list of things I have to do every single day just to feel, well still pretty awful tbh but not bed ridden and hospitalized. It's exhausting. And as i said, this post isnt to make everyone feel sorry for me or anyone else. It isnt about me moaning or venting. It is really just for me to say that if you are out there reading this and you are of good health, appreciate it. Seriously! Appreciate all of the free time you have thanks to not needing treatments and weekly hospital visits. Appreciate that you actually could go for days or weeks without even considering your health or the implications your actions could have on your health.

And if you are reading this and you are sick person too. If you have a chronic disease or illness or condition. Know that sometimes it is ok to be fed up about it all. It is okay to talk about how shit this can be sometimes. You are allowed to feel however you are feeling right now about your health. 

I have all of these issues but I am still so many other things. I can still get up and put a fabulous outfit together and twirl down the street looking sickening and feeling happy and at peace. I take the good with the bad. I deal with it all. Every day. I hope you have the strength to do the same.

Peace & Love xxx

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