No sleep for a week…

I think it’s still a crazy concept to some people that someone with crippling fatigue does struggle (all to often, might I add) with insomnia. Sleep issues are a running issue with Lupus sufferers, we either sleep incomprehensible hours or not at all. Last week, I was on the not at all scale – I have never experienced insomnia that bad before. Insomnia is highly irritating for anyone but, for someone with a chronic illness and chronic fatigue, insomnia doesn’t half do some damage.

There’s no psychological issue for my insomnia; I’m not stressed, upset or overthinking. Sometimes, there is a physical reason and that of course is pain. Insomnia by pain is something I can usually help – strong pain killers will usually numb the pain enough to be able to sleep. Other times, I just cannot sleep which is how last week started out but towards the end of the week, it was a combination of both pain and just not being able to fall asleep.

It takes just one night of inadequate or no sleep to cause me to flare. My joints became painful and by the weekend, I was walking around on a swollen knee and applying Tiger Balm on my joints so now I have stained PJs and owe my dad some Tiger Balm. I had exhaustion induced headaches, my whole body ached like I’d just ran the London Marathon, my appetite vanished into thin air and was replaced by nausea. My usually chilled out personality was replaced by a short tempered monster, which I think is fairly acceptable given the circumstances around it. By Friday my rule of ‘don’t cry over Lupus or what it does or causes’ went out the window – I sat and cried for sleep from Friday to Sunday. I probably looked like a crazy woman curled in a ball on the sofa at 4am crying and saying “please just let me sleep” to the air.

I tried everything; reading, warm drinks, not looking at my phone or the time, counting sheep, counting back from 100, cleaning (which was ended quickly by feeling like I was going to faint), over the counter sleeping tablets (usually effective on me), I tried codeine and tramadol and for a second of desperation I even thought of mixing the two opiates to knock myself out (I didn’t try this in the end in case I actually went into an eternal sleep). Towards the end of the week and this isn’t a joke, but I was debating asking my brother to just punch me so hard it knocks me out. I even found myself saying “it’s a good job they took the bridges down because I would of jumped off the f*cker by now” and that’s what pure sleep deprivation does to you.

By some miracle, I lasted a week…7 whole bloody days…that’s 168 hours on no more than 10 hours sleep. I spent most nights looking at the living room wall, tracing the pattern with my stinging eyes, wishing my dog was downstairs to cuddle, watching the seconds tick by, crying and cursing myself in anger. 3am on Sunday, well the small hours of Monday, I decided I couldn’t take anymore and was going to see the doctor. In a mad rush, I was looking for money because I had none on me for bus fare and ironing clothes, I’m still surprised I didn’t run the iron over my fingers in my exhausted state. Once the receptionists opened the doors and everyone was clambering in to get on the doctors list first (it’s a walk in system) a very kind lady stopped and looked at me, probably taking pity that I genuinely looked beyond exhausted and pointed at the door and said “you go first”, so thanks to her, I was lucky to be 3rd on the list.

“How can I help you?” he asked me and all I could say was “I haven’t slept for a week” he was probably looking at me thinking ‘no shit’. I explained how it was making me flare badly and told him “I think I’m losing my mind over it”. He gave me sleep exercises for the future and prescribed me Zopiclone and he said he can guarantee tonight I’d sleep soundly. As I was gathering my things and saying thank you he showed me a lovely little injection, so I was also stabbed with this years flu jab as well…two birds with one stone and all that.

He was right, I did sleep solidly. I took the tablet and before I knew it, I was waking up this morning. I didn’t even use the pillows and the duvet was only on my legs but yet, it was the best night sleep I’ve ever had. The flare is on-going but it has got a little bit better with sleeping last night, it will take me a good few days to recover from it. The Zopiclone left me quite tired today, especially this morning but I expected that because I used to administer it at work and the patients would sleep on and off during the day that followed the pill being taken. I didn’t mind though, it was an excuse to get more sleep.

I never want to experience insomnia that bad again, and the next person that tells me their suffering badly with insomnia will get the biggest sympathetic hug from me. Sleep is not for the weak, it is a wonderful thing that I love and missed so much. Zopiclone, you bloody beauty, thank you for knocking me out so my brother didn’t have too.

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A final update on Azathioprine

It’s nearly been a year since I was prescribed this medication so I thought it was time to do a final update and for all my fellow sufferers, let you know my thoughts on this immune suppressant medication.

Immune suppressants are a serious thing, more serious than I originally thought. I first realised this when the packaging came with a warning label, reading ‘cyto toxic‘, I had no idea what a cyto toxic drug was which prompted me to research it. A cyto toxic medication means the drug contains chemicals that are toxic to certain cells. The next thing which made me realise that this isn’t a simple medication was the amount of blood tests you have to have. You even have to have your blood tested before you start the medication, the test is called TPMT – I later figured out this was to show how well your liver would tolerate and filter the drug. Mine was slightly low so my dose of Azathioprine will not go beyond 100mg.

At first, the blood tests were extremely tedious, they were initially every week for 6 weeks. Then they moved to fortnightly for 6 weeks and then to monthly for 6 months. I have now reached the end of the tunnel and my blood tests are once every 3 months, if I remain stable on the medication they may be moved to once every 6 months. I didn’t mind the monthly blood tests and luckily they fell on the same day my prescriptions were ready to be picked up. I believe the blood tests are for: full blood count, liver function test (as this medication can cause liver problems) and urea and electrolytes.

My consultant gave me a two-sided information sheet on Azathioprine when I firstly commenced the treatment. One side is more or less for my GP, a lot of medical jargon that I can’t understand but it did tell me how much blood work was needed and when. It was great to have a clear idea of how long each stage of the blood tests could potentially last. I was on my monthly stage for longer than expected, it was nearing 9 months, there wasn’t an issue or I would have been alerted – I just think they forgot to move me up to the 3 monthly stage until I subtlety asked “do you know when I’ll move to 3 monthly tests?”.  The sheet also educated me on vaccines and that live vaccines are not recommended on this medication – a reason unbeknown to me, but that I also needed the flu vaccination along with the pneumococcal (pneumonia) vaccination. I was also told to try and avoid people with mild ailments such as coughs/colds/sickness bugs etc, because my immune system would be lower than normal and I would pick the bugs up easily and struggle to fight them off.

Did I find this a miracle medication? Initially this medication helped with one symptom that I’m plagued by: headaches. However, this didn’t last long and I started suffering daily headaches again. I still suffer pain in my joints daily some days better than others but at some point in the day whether it lasts 5 minutes or 5 hours, I will have joint pain. I still suffer aches usually my back, arms, shoulders and legs – I suffer achiness more so in the mornings and evenings. I still suffer greatly with fatigue and it’s made worse by doing things or going places but I cannot fault the medication for not improving fatigue as I don’t believe any medication will help.

It doesn’t sound like Azathioprine has helped a great deal, but when I think back to when I was solely on Hydroxychloroquine, I am better and this medication has slightly helped. I can do just that little bit more on ‘good days’, however if I overstep the mark on a so called good day, I still pay for it on the days that follow.

Considering I was told I would pick up bugs and virus’ easily I have suffered from very few one being a cough at the start of the year that lingered for months. And more recently, a virus that spiralled me into a flare I couldn’t control and needed medical intervention. I have suffered very minor bugs but they seemed to be 24-hour bugs that I managed to fight off. I made a conscious effort to avoid friends and family with bugs, my friends have been greatly understanding of this and they cancel any plans if they or their children come down with a cold/bug. Of course, it’s harder to avoid with immediate family, especially when we are in the same house but they also make an effort to not spread their germs, they do this by not getting too close to me or touching me. I also keep a bottle of hand sanitizer in my handbag for whilst I’m out and I also have bottles in the house.

Have I suffered any side affects? Oddly enough, I have suffered none. I say ‘oddly’ because when I started Hydroxychloroquine (very tame in comparison to Azathioprine) I suffered horrendously with nausea and could barley eat. However, I have noticed a difference in my teeth, yes I just said my teeth…go with me on this one. I’m on a few online support groups for Lupus and I was alerted that immune-suppressants can cause dental problems. I asked my dentist this and she confirmed that they can indeed cause many issues. I have noticed that I can no longer use toothpaste that has a whitening agent in because it causes horrific sensitivity. And since I’ve mentioned I suffer many auto-immune diseases and take immune-suppressants, my dentist has started to put a fluoride gel on my teeth and gums at every visit, the first time she used it she told me “this lowers your risk of tooth decay”. I’ve also been told numerous times to use Sensodyne toothpaste and I did but that toothpaste is truly vile. It’s safe to say that I no longer put off going to the dentist and when I get my reminder letter, I’m straight on the phone booking in.

Would I change my treatment plan? At the moment, I would be very reluctant to change my treatment plan. It’s not a little change, it’s a whole new medication that I’d have to look into, potential awful side affects, possibly going through all those blood tests again and not to mention…learning how to spell it, seriously why are they so difficult to spell?! I honestly believe if I changed medication, a year later I would be writing about how I feel exactly the same. At the end of the day, the medication is there to control Lupus and I think Azathioprine is controlling mine, despite still suffering flare up, I have suffered no tissue or organ damage *touch wood this continues*. There is no medication that can eradicate the symptoms of Lupus. I once told my consultant “I think this is as good as it’s going to get” he didn’t verbally reply but gave me a nod as if to confirm what I just said was true. I will always feel Lupus because it demands to be felt. If my consultant was to propose a change in medication because he thought it would be best for me, then I would. But, for now I think I’ll stick to Azathioprine because like I said, I think this is as good as it gets…unless my teeth start falling out, then I’ll change my meds faster than a speeding bullet.

The Daith piercing: it’s pierced!

I finally got around to it, better late than never! In the last week I have suffered two migraines, one of which was last night and it spurred me on to get it done today. I have the lingering remains of yesterdays migraine, which I took nothing for this morning so I could test out the ‘instant relief’ feeling a lot of people have spoke about. However, on the way to the piercer I started to wonder if this works in a subconscious way? I’m still very sceptical if this will work or not, at the end of the day, it is a controversial subject. But, for £20 it’s worth a try.

As I was filling the disclaimer form out, I was certain they were going to tell me I couldn’t have it pierced. There was a box I had to tick if I had an immune system issue and another box asking if I had taken aspirin in the last 24hrs. Of course, both answers were yes but still, they let me proceed. I asked the piercer if the pain would be like my Tragus piercing (the most painful piercing I’ve had done and I’ve got my tongue pierced!) to which she said yes. I asked that after she told me to lay down on the bed, I have never laid down for a piercing so naturally I thought “this is obviously going to be a horrific experience”. But, to my relief it was fine and she asked me to lay down because she was short and needed to be able to see properly. I heard stuff going on, and I thought it was her marking my ear or something. But, what I actually was hearing was a needle going through cartilage. Lovely.

As for the instant relief, nothing. There was no instant relief, which is making me believe this might just be a subconscious thing after all. Although, I can confirm my headache hasn’t worsened throughout the day and for that reason – I haven’t written it off just yet. I still need to see if the amount of headaches I get decreases or remains the same, I guess that’s the real test.

I mentioned in my last post about the piercing that I didn’t like how it looked and how I thought it looked oddly placed. But, now that it’s in I quite like it, so regardless of it working or not I’ll more than likely keep it in. It quite hidden, it’s not obvious that it’s there and I like that. Here is a picture of it:

The piercer told me it can take up to 18 months to fully heal, which is near enough the same time as my Tragus piercing. Although my Tragus piercing took maybe 3-4 months to heal, so I’m hoping the Daith piercing will follow suit and heal quicker than expected. I’ve had it pierced on my left ear due to my Tragus piercing being on the right and since the areas are close together I didn’t want it to look too busy. The only issue with this is, I sleep on my left side!

So overall, getting it pierced does not hurt. I felt no instant relief but I remain optimistic. And actually, after all my moaning – it’s actually quite pretty!

I will write an update post in a month or two. That way, I’ll know for sure if it’s a myth or a miracle!

Dear Lupus,

I hate to admit it but, you’re smart. You play hide and seek tremendously well, nobody believes me when I tell them I’m sick, you can even hide yourself when I have my blood tested. But, I have to ask, do you hide because you’re a coward? Or is hiding fun for you? Is this a game to you? Because, to me it’s not a game, it’s my life.

Why did you choose me? Did I do something wrong? You should of introduced yourself gradually, that way, I would have stood a chance at understanding you. For months, I was left confused, angry and upset at what was happening to me. I don’t frighten easily but you frightened me, all because you wanted a head start and introduced yourself too quickly. But, you like that don’t you? You like me to be frightened of you. It’s been two years, have you figured out that I’m no longer frightened?

It isn’t me that is causing the chaos, it isn’t me that declines invites and it isn’t me who cancels plans. I didn’t want to attend occupational health appointments, I didn’t want to be medically resigned from my job at the age of 21. I didn’t want to sit across from a nurse and answer questions, did you know my answers were scored? I was scored so they could see how sick I am, which is difficult to prove because you hide. Don’t you see? I’m judged daily by people who barley know me and by those who are meant to be close to me. Judged by people for YOUR actions. You think you make me look weak, but let me give you an analogy: you hide whilst I’m showing my face, smiling through the pain you cause, smiling when I know fine well I’m being judged. There’s not one person on this earth who can see you. Although I can’t see you, everyday I feel you because you demand to be felt.

What gives you the right to hurt people? Not only do you hurt people physically but you destroy them mentally. What’s enjoyable about reducing someone to tears because they can’t take the pain you cause for much longer? You make people feel useless, worthless and a burden to their loved ones. I can safely say, I have felt all three of those emotions. You have caused me so much pain and emotional discomfort that I’ve been curled into a tight ball on the floor and sobbed my heart out. It’s not just me you hurt, you hurt my loved ones, do you think they enjoy watching me walk around in a permanently exhausted state? Do you think they enjoy watching me suffer in pain? They don’t, and part of me dies when I see and hear the worry on their faces and in their voices. It leaves me feeling guilt ridden, guilt ridden for something beyond my control, guilt ridden for you because you feel no guilt.

They tell people you’re unpredictable, and for the most part you are. But, everyday for the last two years, I wake up and expect pain. And everyday for the last two years, I have received the pain I had expected. Sometimes I can bear the pain you cause but sometimes I think you’re too strong for me to fight and I start to believe this is a battle I have no chance at winning. But, that is a temporary thought because I’m playing you at your own game and I will only let you win for so long.

What exactly is your plan? It’s clear to me that so far this has been child’s play and you can and will do worse. The doctors and researchers tell me that death by you isn’t common anymore. But, that’s not to say you won’t try, will you eventually grow bored of me and give it all your might and end it? Because I will fight back with every fibre of my being. I’m too stubborn to go down without a fight. Did you really think I wouldn’t research you? From day one I’ve known you have the power to kill me and I even know how you’ll possibly do it. Do you know how that feels? To have a need to read up on things like that? The first few times I attempted to read about you, I stopped each time death was mentioned. It was tormenting.

Thank you, yes, I just thanked you. Because you have taught me many lessons, one being that you must find the positives in every situation no matter how tough and devastating those situations are. I have found a world of incredible people, people who battle you and other debilitating illnesses everyday. I have gained an eye that can see pain that isn’t visible to the majority of people, I have gained a level of empathy most people couldn’t fathom. I have realised it’s not the things we own that matter, it’s the people around us. I have gained strength and I carry hope with me everyday and I will never let it go. It’s likely I wouldn’t learnt these things without you, but these are things you can’t take from me.

I’d love nothing more than for you to leave, but you’re here to stay. Whatever you try and however hard you try, always remember that this is my body and my life. I’m done with you taking things away from me and no matter how much pain and devastation you cause: I will not give you the satisfaction of giving up.

Regretfully,

Emily Holling.

The Daith piercing: does it work or not?

I’ve been debating getting this piercing for a while. I’d think “yes, I’ll get it” and then I’d think “there’s no way a piercing could help headaches/migraines”. It does sound odd, a piercing alleviating headaches and migraines, but apparently it’s a pressure point, so it’s almost like having permanent acupuncture in your ear. During my research for it, I have found people claiming it has also alleviated their anxiety.

I’ve never been the kind of person who would wait for a piercing or spend time researching them. Through my later teenage years, when parental consent was no longer an issue, getting a new piercing for me was just a ‘fun’ thing to do. I don’t know how getting a needle through part of your body is classed as fun, but it was. I have gone through many, my nose was pierced around 6-7 times, I’ve had my tragus and cartilage pierced, my belly button and tongue. The only ones that are still remain pierced are my belly, tragus and tongue.

So why am I now holding out? Is it because my phase of spur of the moment piercings is finally over? Or is it because I’m genuinely skeptical that this will work? It’s probably a bit of both. It’s also not a piercing I’d say is ‘pretty’, if I wasn’t sick and didn’t have daily headaches I wouldn’t be contemplating it. It’s a piercing to me, that looks randomly placed – as if the wrong part of the ear was pierced.

I have asked fellow Lupus sufferers if they have tried it out, some saying it’s the best thing they’ve done and others saying it was a waste of time. I guess, its falls on the individual in regards to it working or not. I suffer from headaches nearly everyday, whether it be a normal headache, a pressure headache or a migraine. So, for my own curiosity I have decided to get it pierced.

I plan to get it pierced at some point next week and I will be writing a series of post regarding the effectiveness of the piercing.

(Also, please keep me in your thoughts because I have a feeling it’s going to hurt like a bitch).

I recently had one of my worst flares to date…

The start of August wasn’t great, my Lupus intensely flared up. I picked up a virus and due to that, it went haywire causing an array of issues. I’m late writing about this, it happened from Saturday the 5th of August to, well, now as I’m still recovering. You unfortunately don’t wake up one morning recovered from a flare, it can take days to weeks or even months to recover.

Friday the 4th, I was my usual self, maybe a little more fatigued than usual but nonetheless – nothing dramatically wrong. However, that night I slept dreadfully, I fell asleep around 3am but even then I woke every hour with a nauseous feeling. Every time I woke up, the sun was getting brighter and at around 8:30am I decided to just get up. I sat outside with a cup of tea and by 9:30am decided to try go back to sleep, as soon as I got into bed I was back up and vomiting. By 12pm I had vomited 3 times and had given up on sleep entirely.

Sunday the 6th. I woke up, from another sleepless night and feeling worse. This was the day my Lupus started to rear it’s ugly head. I was sat drinking water and I was almost certain I was about to faint, luckily I didn’t. But, I was shaking, my head was pounding, my joint pain was relentless and I started vomiting again. Just keeping my eyes open was exhausting and I couldn’t bare the thought of moving. I couldn’t even tell you what conversations I had and with who that day, I was so exhausted and in pain I can barley recall the day. What I can recall though, is it was the first time since my diagnosis that I rang out of hours for help. I was taking Tramadol and even though it dulled the pain, it wasn’t helpful and I was still suffering. They told me I had to see a doctor and on the way there I said to myself “I can’t be bothered with this illness anymore” because I genuinely didn’t have the energy to try and fight back. I wanted to curl in a ball, cry and honestly, disappear. Luckily, I was the only one in the waiting room so my wait was less than 5 minutes. The doctor took my temperature and it was raised, checked my ears and listened to my chest and they were clear. He checked my throat and he said it was red, he had me do a urine sample which was also clear and he checked my stomach which was sore as he pressed down on it. His diagnosis was a virus or the start of laryngitis, since the visit my throat hasn’t got worse so it was a virus all along. He couldn’t prescribe me anything stronger than Tramadol, so he prescribed me more to keep taking. After the checks and prescription were done he had a chat with me, he told me I need to get my Rheumatology appointment brought forward and told me that I really need to go on steroids. As soon as I heard the words “you need steroids but I can’t prescribe you them” I wanted the ground the swallow me. From the start of my diagnosis, I have been dead set against going on steroids unless I’m told I will die without them. I am yet to bring my Rheumatology appointment forward for the fear of being put on steroids.

This week has been rough. I’ve eaten next to nothing, my joints have been so sore and my fatigue just doesn’t seem to be improving – it feels like I’m at a dead end.
I try my very best to stay optimistic but this week has tested me, I’ve found it very difficult to take part in everyday activities and do basic tasks and I’ve felt extremely low in mood. I hate the thought of people thinking I’m snappy or horrible, I try my best to not be and it’s for those people I try my best to keep a smile on my face. My mood is slowly improving but I’m still struggling with a lot of pain, aches, headaches and nausea, but thankfully I haven’t vomited since Friday.

It’s the first viral infection I’ve had since being put on immune suppressants, which is good going as I have been on them since November. I was told I would more than likely constantly catch viruses and bugs. And, because of my lowered immune system it’s taking longer for me to shift it.

I can only hope that I start to properly improve this week. This has probably been my worst flare to date.

There’s been better days. Diary entry: Thursday 20th July.

I've been dealing with a headache for around 4 days now. It seems to change in intensity throughout the day, going from what I'd call mild to intense and sometimes it's just a pressure headache – like my brain is expanding or someone has my head in a vice. I've talked about those headaches in past posts, I call them Red Queen headaches because the Red Queen has a massive head and that's what it feels like.

This past week has been a struggle with fatigue. I'm always tired but the last few days I've been asking myself "is 7pm really to early to go to bed?". My evenings have literally been spent clock watching. I mean, I really should just go to bed when I feel I need to. My body clock is already all over the place so I don't want to mess it up more. Either way I can't win, the end result will always be the same: tired.

I woke up today feeling generally okay, well, as best as I could but things went downhill pretty quickly. I'd say within in an hour or two of waking up I started flaring. This is what I dislike the most about this illness – it changes with no warning, you think "today feels like it's going to be alright" then the next thing you know, you're curled up in a ball on the sofa wondering where your 'alright' day went.

It started with a throbbing pain in my right knee, the throb was accompanied with a sharp pain. Then it quickly went to both elbows, the only pain I really get in my elbows is a sharp pain and the pain travels down my forearm like electric shocks. It's very typical of my knees and elbows to hurt, it's the joints my Lupus affects the most. Pain in my shoulders is less common, but today I had the worst pain in my right shoulder. It was a burning sensation mixed with a sharp pain, it started so suddenly and out of nowhere (like nearly everything this illness throws at you). It was the burning sensation that made it unbearable, fortunately the sensation didn't last long but the sharp pain decided to stay for the day. It's also sending a dull ache down my upper arm. So today, my full right arm has been affected – not so helpful when you're right handed!

I was sitting waiting to see if any of the pain would subside but nope. It wasn't letting up and I couldn't sit in pain any longer so today has been a codeine day, which I'm sure my headache will thank me for later. And by that I mean, I'll probably wake up with a blistering headache tomorrow, what's new? I'm due another dose in an hour and a half and it can't come quick enough. It's helping but not fully, it's just taking the edge off it all.

It still mind boggles me how any part of my body will start hurting, it's as quick as turning on a switch. Some parts of my body hurt briefly, like the soles of my feet but then it'll move to my legs or fingers. Although I'm writing about my joints, because those are the areas that have consistently hurt, nearly my whole body has been affected today. It just gets tiresome when there seems to be no break from pain.

I spent the day curled up on the sofa with
a blanket and my dogs in a codeine haze, having little cat naps and drinking tea…all whilst trying to get my head around the new season of Orphan Black…that's not a show you should watch whilst on codeine.

What a day! There's always tomorrow. As always, thank you for reading xo

Lupus and being abroad: diary entry 5. Would I recommend it?

I’m back in little old England, I landed at 5am this morning after the most dreadful flight – a toddler screaming for the majority of a 4 and half hour flight isn’t what anyone wants. I started travelling last night at 10pm Turkish time (8pm British time), so it was a long night of waiting around and what seemed like endless security checks at Dalaman Airport. 

I was awake for just over 24 hours, which is a risk in itself with already having chronic fatigue, you never know if forcing yourself to stay conscious for such a prolonged period of time will cause a flare up. For me, it usually does, I’m currently feeling extremely fatigued, aching, headache and I keep getting waves of nausea. 

Before I get to the whole “would I recommend putting yourself in blazing heat with a illness that hates heat” discussion I thought I’d recap on my final two days.

Thursday: Wonderful, despite the temperature reaching a firey 40+° and me being on codeine for joint pain in the knees. I was under a parasol for the whole day and yes, probably completely oblivious to the fact the temperature felt like fire around me due to being on codiene. It was our last day on Coco Beach, we stayed on the beach until the Garson no longer took orders. I honestly couldn’t tell it was that hot but again, codeine was clouding my mind. On the evening we walked around Icmeler, catching up with friends from a previous year of holidaying. It was just a lovely day. I took tramadol that evening and slept better than I did the whole holiday. 

Coco Beach.

Final dip in the sea at Coco.

Friday: In contrast to Thursday, this was a horrible day. It was 45°, that’s what the barman told us at around 5pm so during the afternoon it was probably hotter. My day started later, I got to the private jetty at 10:30am. I couldn’t cope. I was in and out of the sea like a yo-yo, as soon as I was out, I needed to go back in. I felt like I was going to hit the deck at any moment. We went for lunch and sat in the shade with cold drinks, that seemed to bring me back around. As soon as we got back to the jetty, I deteriorated again. It’s like a sense of being restless because you just don’t know how to gain control of the symptoms you’re experiencing. In the end I left the jetty and went back to the room and laid on the bed for about 30 minutes, I took a shower and then started packing. There’s absolutely no way I could of sat in the sun any longer. As you know, by nighttime I was embarking on my long journey home. It was an extremely long and tiresome day. 

Would I recommend it? Yes. Do it, go on holiday. Lupus strips us of so many things in our lives. We put up with so much, we’re beaten down by our own bodies daily – why shouldn’t you be rewarded for being a total badass and fighting yourself daily? 

Yes, there will be bad days, but don’t feel guilty for needing to go rest in your room or sit in the shade. If I’m honest, I spent the majority of my holiday in the shade, I didn’t put myself in the sun for prolonged periods of time, if you do that then you are asking for trouble. I understand some Lupus patients suffer a considerable amount in the sun and their rashes turn to big blisters, it’s a no-brainer on why they avoid holidaying abroad. I do suffer in the sun, it does bring me out in rashes but not the extreme scale that it blisters. If you react moderately well in the sun, try it. It’s 14 days out of 365, you have nothing to lose by trying it. So what if I flared? I was going to flare anyway with the damp weather in England. Instead, I chose to flare in the sun and a waiter brought an ice cold drink to my lounger. You see, that’s the point, we flare in cold weather and we flare in hot weather…we can’t win. 

Some people are probably still wondering why I did it to myself, I technically brought bad days upon myself. Why? Why did you make yourself suffer? And the only answer I have for that is I refuse to let this illness control every aspect of my life. I will never bow down to it. And I certainly will not let it frighten me, not now and not ever.