Rheumatology Appointment – 30th November, 2017: Changes I wasn’t expecting.

I had a funny feeling that something was going to change or happen at this appointment, I’m not sure why, but the last time I had this feeling, my whole treatment plan changed. It could just be that I’m a superstitious person, but so far that feeling hasn’t let me down. Although the change is only minor, it was enough to irk me.

If I’m honest, I was already in an irritated mood, it was snowing with bitter winds. Which, I admit, sounds like a stupid reason to be annoyed but when Raynaud’s sets in and you can’t feel your own limbs, you get irritated. I think I made it worse for myself by imagining the things I’d rather be doing than trekking to the hospital in snow and winds.

There’s something about the waiting room which depresses me, either because it’s a room I’ll spend so much of my time in or because it’s a hospital waiting room – probably both. I sat and read a mind numbing celebrity gossip magazine until I was called by the nurse for the routine checks of blood pressure, weight and urine.

I was expecting all 3 to come back clear as they usually do, which my weight and blood pressure did but for the first time my urine did not. It showed positive for protein, something usually not to worry about but I have researched mostly everything you can about Lupus and I know that protein in urine can be an indication of kidney involvement. I asked if that was anything to worry about and the nurse told me that people can naturally have protein in their urine and there’s usually nothing to worry about. She wrote my details on the bottle, I assume the sample went to the labs for further testing.

I struggle immensely with figuring out what is significant enough to tell my consultant, there was 6 months in between appointments this time and I think it’s too long. I decided that the most significant issues were the two bad flares I’ve had since my last visit.

I started with the flare that was caused by a viral infection, the flare that resulted in a visit to an out of hours doctor. I mentioned that the doctor I saw had said I needed steroids to get the flare under control but I could only get them prescribed from my consultant. I wasn’t surprised to see my consultant look a little puzzled by that. He confirmed my suspicions that, if I need steroids, my GP can prescribe them.

I proceeded to tell him about the flare that was so prolonged that I thought it would never end, the flare caused by insomnia. I explained that I slept for 10 hours in a week. I told him my joints were painful and swollen, that I had headaches and pretty much any other symptom you can think of, he said no sleep for that length of time will do that to me. I have spoken to him about poor sleep in the past which he confirmed is all part of Lupus.

The appointment moved onto the usual questions, are you still having regular headaches? “Yes”. Are you still having joint pain and aches? “Yes”. Have you been getting rashes? “No”. Slight lie, I have but they don’t stay long and ironically after the appointment, I had two – both on my face.

One of the hardest things for me to overcome and it’s something that I’m still trying to overcome, is that I’m not a pain in the bum to doctors, family and friends. Which means, admitting that you don’t think your current treatment plan or dose is working as best as it should. Which brings me to the part of the appointment I wasn’t expecting…

Are you having more good days? “No”. Are they mostly bad days? A thought flickering through my head to be honest with the doctor trying his best to help, “yes”. There was a slight pause in the conversation and then he told me he would like to increase my dose of Azathioprine. He asked me if we should increase it to 125mg or 150mg. It’s was like he was asking if I wanted the small bag of sweets or the large bag. I was more in shock because in the past I was told the dose would more than likely never go above 100mg, and if it were to be raised, doctors would need to be cautious due to low TPMT test results. I shrugged and said “I’ll leave that decision to you”.

He raised the dose to 150mg and lowered my appointments to 4 monthly. He handed me a prescription, a blood test form and a form to hand to reception. As I was leaving he said the sentence that irked me “your blood tests are now fortnightly”. It had taken over a year to just get to the 3 month mark for blood tests and now I’m back to fortnightly. I know nobody is to blame, but it’s annoying.

I went to the hospital pharmacy and then on a hunt for the biggest bag of Maltesers I could find…I found a bag and I also found Toblerone and I’m yet to find a regret.

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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.

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!

The Glass Box

Years ago I attended counselling sessions for an issue unrelated to Lupus “it’s like you’re in a glass box, looking out on the world”. I didn’t think much of her words at the time, but now they are poignant to me. I was 17 and looking back I wasn’t trapped in a glass box. I didn’t enter a glass box until I became chronically sick.

I think a ‘glass box’ is a wonderful analogy for life with a chronic illness. Illness takes you on a different walk of life, life starts to revolve around your illness: have I put my meds through? Have I taken my meds? Do I have enough pain medication? If I do this, will I suffer? Activities that were once simple are now a burden and some seem impossible.

There is a door on the glass box, but it’s locked and there is no key available. There’s nothing inside the box and despite how hard you try, the glass cannot be broken to escape. There isn’t a soul on this Earth that can open the box from the outside. We are trapped within the box and like my counsellor said “looking out on the world”. We watch people go to work, school and social events. We watch people run errand after errand, watch them push their bodies to the limit in workouts for them to get showered and to move onto new tasks. We watch people do normal daily things that would break us, on particularly bad days the smallest of tasks can feel like climbing Mount Everest.

The glass box can be a lonely place, you’re trapped inside on your own but you can see and talk to people. You try to explain what’s wrong with you, how you’re feeling but to no avail. Nobody around you is trapped and they cannot enter to gain an understanding. You’re left with a lot of alone time, time often spent thinking about how your life was before you became sick and trapped. When you’re left with time to think, it often leads to frustration because you miss what you used to be – you miss being busy and active without a care in the world. There was a time you were watched from a glass box by an envious chronically sick person.

You start to accept that there is no way out and you learn to adapt to your new life. I’m starting to forget what my life was like before Lupus, most things have started to blur. I can’t fathom how I lived and got through my days, and that’s because it’s not normal to me anymore. Getting through a painful day, putting medications through and keeping track of hospital visits is now my normal. Some would find it sad that I’m starting to forget how I lived before I was sick, but to me it’s not important, if I remembered I would dwell on it and that would be detrimental to my emotional well being.

The Glass Box to me symbolises my own body and illness, boxes are unique to each person suffering a chronic illness – even if that illness is the same as mine. Before I accepted my new normal I looked out to those busy people from my glass box and thought of them as super-human for doing normal daily things. From the outside looking in, it looks like I don’t do much at all. The reality of that is I battle my body daily, my own body wants to kill itself and everyday I experience pain in every part of my body. I am weighed down by fatigue, because my body is tired from pain and from fighting itself. Accepting that I was sick with an illness that can’t be cured wasn’t easy and it took me a while but when I finally did, I realised its us, who battle themselves everyday that are the super-humans of the world.

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.

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. 

Lupus and being abroad: diary entry 4.

This post is going to be a mixture of how I’ve been the last few days. Like I said in a previous post, I’ve had fairly equal days in terms of being good and bad. However, I have noticed in the recent few days my days have almost been split, I’m fairly good in the morning and I quickly decline by afternoon. The temperature is rising as the days go on and the breeze is slowly withering away to nothing. There usually is a breeze in the morning hours but it seems as it gets to 1pm it suddenly stops, and returns at late afternoon/sunset. This means by afternoon I’m typically under the parasol or cooling off in the water. 

I have noticed I’m affected more when my head is directly in the sun. Which is where a sun hat comes in handy, the downside is the hat makes my head sweat and can make me feel worse, it almost gives a sense of over heating. 

I thought I was doing well on the rash side but on a morning walk earlier this week I developed one. I was in Turkey in 2015, I was in limbo with getting a diagnosis and I developed a rash on my chest, just next to my shoulder. The rash I developed this earlier this week was in the exact same place. At first it didn’t bother me, in fact I hadn’t spotted it, my mother did whilst we were in the sea. But, as the day wore on, it started to itch and it became hot. The heat from it could of just been my skin in general as my shoulders were slightly red but my Lupus rashes are generally hot to touch. The rash was slightly raised, it lasted longer than I anticipated, a day and a half. I kept applying factor 50 and Nivea Soft cream. I always find Nivea Soft soothes Lupus rashes, I didn’t think ahead to pack it but luckily the little shop in the hotel sells it. 

The rash on my left shoulder/chest.

I thought my sleep issues would have settled during the holiday, with being in the sun and around the sea but they haven’t. I usually sleep on my right side but last night I couldn’t lay on it. I had pain in my right hip, like stated, I sleep on my right side so I kept reverting back to it and being awoken by pain. It wasn’t just last night that brought poor sleep, most nights have been restless, just like at home. I woke up feeling very achy and a bit out of sorts so I had a late start, I just sat in bed munching on biscuits (Milka biscuits are delightful, they’d be even nicer with a brew though) and strolling through the internet.  

As the holiday goes on I am starting to struggle more. I’m becoming increasingly fatigued and starting to have an ‘unwell’ feeling, again, it’s a feeling I can’t perfectly describe. But after all, I’m no longer designed to be in the sun, I’m not meant to be sat in it, people must honestly think I’m mad for being here and in a way I totally am mad but you can’t say I haven’t tried it. Mum overheard a woman on the beach yesterday saying she declared Lupus on her travel insurance – so it’s not just me putting myself through blazing heat and putting myself at risk of dire symptoms. Maybe madness is a trait we develop when diagnosed? If I flare massively when I return to British soil then so be it. I’d rather flare with decent wifi, my dogs and Netflix than here, when I’m meant to be enjoying myself…if I do flare as soon as I land at least Lupus has the decency to hold fire until the holiday was over. 

I’ve reached the second week, all in all I think I’ve done well. Yes, there’s been bad days but there’s also been fairly good days. I’m still enjoying myself, which is the whole point of the holiday. But, I must go because I’m bloody red hot and need to get into the sea. 

The wifi is co-operating with me today so here is some pictures! 

Breakfast yesterday: a waffle with Nutella, fresh strawberries and ice cream. At least there was fruit, right?
A little feline friend I made on the beach last week.
Mum and I one evening last week.
The view I had writing my previous post.