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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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!

Lupus and being abroad: diary entry 2 (19/6/17)

I wouldn’t say today was a write off, but it wasn’t the best day. I didn’t expect my first “bad” day to be on my third day here, I expected it to be at least 5-6 days in. But, I guess that’s Lupus to T – unpredictable. 

What confuses me the most is, today is cooler than yesterday, there’s more of a breeze. I mean, yesterday Lupus had its moments but it seemed to clear after an hour or so – especially after cooling off in the sea. Not today, I can’t shift it. It’s a feeling I struggle to describe (I say that a lot, don’t I?). My eyesight goes fuzzy and I get lightheaded, sometimes I think I’m about to faint if I don’t sit or lay down. My head starts to pound or feels like it’s swelling. It’s generally just a very uncomfortable/unwell feeling, which sucks whilst you’re trying to have enjoy your holiday. 

I did find myself some shade to sit in whilst having a cold drink, that seemed to help a little. During my shaded rest, the sun crept behind the trees which shaded my sun lounger so I went back to lay there and continued reading. All I’ve really done today is read and drink very cold drinks with ice in – I can actually enjoy a drink with ice in as I’m practically Raynauds Phenomenon free for 2 weeks. Saying that, I haven’t dipped in the pool all that much today because as soon as I get in I’m covered in goosebumps, but it is a very cold pool, but it hasn’t aggregated my Raynauds at all. 

I’m very tired but again, it’s a mix of the heat, general Lupus and I’m probably still recovering from the travelling. I haven’t suffered too much from joint pain, it’s still there especially in my knees and elbows – as I’m writing this it’s starting in my left wrist. Just like at home, it comes and goes when it pleases. I’m still regularly taking paracetamol and ibuprofen, I don’t really want to touch codeine in the day time. I don’t want to be in a haze in high heats or around water. I’ll take it on an evening before going to sleep. I’m still chugging water like it’s going out of fashion but my favourite drink today has proven to be Orange Fanta, it’s a bit more refreshing than plain water. 

I seem to be taking the sun well on my poor feet, I’ve been sat with my beach cover up over them as they feel like there on fire! My ears too, apparently the sun has taken a liking to those. Don’t worry, I won’t be returning to the UK with just tanned feet and ears – the rest of me is tanning as well. 

I’m back in the hotel room now, with the air conditioning. I’m probably going to lay on the bed for the rest of the afternoon to try make me feel a bit more human. Mum and I will probably venture back out in the early evening.

I’ll be sure to keep this updated as much as I can. Thank you for reading! 

Rheumatology appointment | 1-6-17.

Hello! It’s been a while since I’ve updated you all – I’ve said it before but I haven’t really had any ideas regarding posts. That being said, I’m going on holiday later this month and I’m planning to write posts whilst I’m there. They will mainly be concerning how I’m handling the heat, as many of you have probably guessed that Lupus and heat typically don’t mix very well. But, I’ll be damned if Lupus stops me going on holiday! 

 I had my check up with my consultant earlier this month. There was a 4-month gap between this visit and my previous appointment, which is fine but Lupus is so unpredictable and changes daily that it’s near impossible to remember and tell him all symptoms I experience in between visits. I tend to highlight the most bothersome and most occurring symptoms to discuss. 

All usual checks (those being: weight, blood pressure and urine) were absolutely fine. One of my first points to make was my headaches are staring to re-occurr again except there is a slight change, sometimes they aren’t particularly painful. They feel like a pressure – I describe it as feeling like the Red Queen from Alice in Wonderland with her huge head because it feels like my head is just swelling and could burst at any given moment. He asked how long this sort of headache lasted and I said it could be anything from an hour to a day. Aside from my Red Queen headaches, I do still get my ‘usual’ headaches that can be anything from mind to excruciating. A few weeks ago I had a migraine that lasted several days. 

My next point was sleep, it’s becoming an issue. I told him I typically fall asleep fine, my issue is staying asleep…which made me look like a liar because I couldn’t fall asleep last night, I eventually went to sleep at 9am this morning for a grand total of 4 hours. He asked if there was a reason why I struggle to stay asleep, sometimes it’s pain but others there’s absolutely no reason for me to keep awakening. I told him it’s odd because I’m chronically fatigued, to which he assured me it’s a common issue with Lupus patients. We discussed treatments but he told me he would be hesitant to prescribe them because of the addictive nature of the medication, which I fully understand and accept. I admitted to sometimes using over the counter remedies, which he was fine with. 

My final topic was holiday advice, at first he said don’t go…but then he gave me actual advice – things I already knew but I thought it would be best to throw it in there in case he had any other tips. I have to get a hat, wear factor 50 suncream and apply it often, drink a lot of water and to try Turkish watermelon…doctors orders, I’ll have to get myself the biggest wedge of watermelon I can find! 

I didn’t have any blood taken at this appointment, I get it tested so often by my GP that it would have been a waste of time. All my blood tests are fine and I’m still tolerating the medication. He said although I’m still experiencing symptoms, it’s in my best interest to stay on my current treatment plan. It came across to me as a kind way of telling me this is as good as it’ll get. I’m at a point where I fully understand I probably won’t ever be symptom free, I just want it under control as best as it can be. 

My appointments with my consultant have gone from 4 monthly to 6 monthly and that’s good news to me. 

The never ending circle of fatigue 

Fatigue is one symptom I struggle with the most, I have days where I think I have it somewhat under control – what I mean by that is I can do more basic daily tasks than I did the previous day. I wanted to do a post covering it, in the best way I can because it’s something I struggle to describe but I’ll try my best. 

Have you ever been so tired that you have thought to yourself “I feel like I could sleep for a week”? That’s how I and millions of Lupus sufferers feel every second of everyday. 

I don’t think people understand the enormity of my fatigue, I’m often advised to take a nap to help me come around. I’m also told that if I do more I won’t feel as tired, but how can an already exhausted person find the energy to do more? My tiredness is not like a ‘normal persons’ tiredness, it feels like I’m drowning but I can’t escape and nobody can pull me from it. It’s not being able to think straight or concentrate on a conversation. It’s being in a foul mood, things annoying you that shouldn’t annoy you. It’s curling into a ball and breaking down because you think you’ve reached a new level of exhaustion: you haven’t, you can sink further. Nothing helps, not sleep, not coffee, not over priced energy drinks and not a special fancy diet. 

You’d think I’d fall asleep at any given point but here’s a twist: insomnia. Yes, you read that right. A girl who is so weighed down by fatigue often struggles with insomnia. It could be pain keeping me awake or I just can’t fall asleep, take last night for example – I didn’t fall asleep until 4am and even then it was broken sleep. 

I think the hardest part about fatigue, like this illness – you can’t see it. People think I just want to lay in but I can’t physically or mentally function on a morning. If I go out wearing make-up, the dark eyes are covered up so people usually think I’m being dramatic and they think I mean I’m a little sleepy but what I actually mean is “I’m so tired I don’t think my legs can physically hold me for 5 more minutes”. However, sometimes you can see it, my complexion becomes very pale apart from my under my eyes, they turn extremely dark. This is when I look very unwell. It’s when you can see something isn’t quite ‘right’ with me. It’s at this point of fatigue I can’t even bare to talk to people, I don’t have the energy to lift my arms up. I don’t move, I stay in a silent ball wrapped up in blankets. 

Fatigue affects every aspect of my life, it causes me to feel nauseous and on numerous occasions I have vomited from being exhausted. I have explained in past posts that every so often I struggle with poor appetite, and that’s because the fatigue (and other symptoms) destroys it. Sometimes I get up and have to rest upon a wall because I think I will faint. I have had to catch myself numerous times to avoid falling. I can be stood for 5 minutes which to me can feel like 5 hours. I will lay on cold tiled floors and find it as comfortable as a bed because I’m exhausted. I can’t tell you how many times I’ve sat on my bathroom floor and just looked at the shower that I need to step into. I sleep for 10 hours straight to wake up feeling as tired as I did when I got into bed the previous night. If I’m the middle of a conversation with you and it looks like I’ve switched off, chances are, I have. Don’t be offended, the same thing happens with the TV and reading. I struggle to concentrate on certain days. 

You have to remember I am fighting my own body everyday and that has to have some affect on my energy levels. I have to work much harder than others to get through my day, even if that looks like nothing at all. 

If you have someone close to you suffering a chronic illness, understand that when they say they are exhausted they truly are. Please don’t get angry if they leave an event early, it has taken so much out of them to be there. Please don’t get upset if they cancel plans or don’t do something you asked them to do. We try, we really do, but sometimes we try too much and it backfires. Patience, sincerity and understanding is all we ask for. 

Rheumatology appointment 2-02-17.

I had my routine appointment with my Rheumatologist today. There’s honestly not much to talk about but I thought I’d write about it anyway since I’ve wrote about the others. Sometimes the appointments are really short and sweet because there’s not much going on or any major changes. Today was short and sweet. 

My weight is fine, I’ve lost a little more weight since my last appointment. This seems to be the case at every appointment, I’m starting to think their scales are broken. My blood pressure is fine, my consultant said it’s “wonderful”, it’s 103/73 which I thought was low but I guess it’s wonderful. 

I have recently been slightly concerned that something was going wrong with my kidneys, I’ve had a dull ache/pain in my back. I think it’s just in my mind that kidney involvement is very common in Lupus. All tests that would show any kidney involvement are fine, so my mind is at rest. I guess it’s just a new pain I have only just met. It’s not constant, sometimes it’s there for a few hours, sometimes a day or two. It’s weird, but then again so is Lupus. 

All my blood results are fine, there was probably a lot of them for him to look at since I’ve been having them weekly and now fortnightly. I didn’t get any blood taken at this appointment due to them being fine and having them done so consistently. I actually imagine the pathology department receiving my blood and eye rolling “this girl again?!”.

He asked me the usual questions headaches? Joint pain? Dry eyes? I told him my headaches aren’t as severe or as consistent on the new medication but I do have one today. I also told him I still get joint pain but I think a lot of that can be blamed on the damp weather, and oddly my right eye has been drier than the left. 

I see him again in 4 months time and we have agreed to stay on my current treatment plan of 100mg of Azathioprine and 200mg of Hydroxychloroquine.

I ended the appointment saying “I think this is it now, I don’t think I will get better than this” which might seem like a negative thing to say but I genuinely don’t think I will. He nodded and asked “do you think?” I think his nod confirmed that what I said was right. 

Tuesday 4th October. 

It’s been a relatively productive day. Productive for me anyway. I cleaned the house, got my nails done and walked my dog. You’re probably thinking “what’s so great about that, I do that stuff every day”. I usually struggle to do tasks one after the other, saying that I didn’t do it all one after another, I took breaks. In fact, my day didn’t start until this afternoon. 

My mornings are typically slow. I stay in bed for about an hour, check my messages, social media and the news to see what’s happening in this crazy world. Once out of bed I make a drink and sit curled up in my dressing gown on the sofa. By this point I’ve usually established what kind of day it will be. I woke with a headache today and usual aches and pains in my joints but not severe enough to stop me in my tracks. So I decided today, I will get stuff done!

I cleaned the house bit by bit, taking a break in between rooms. If I didn’t take those breaks I wouldn’t have been able to do the other parts of my day. 

I called the salon to make a nail appointment, luckily she could fit me in this afternoon. I didn’t get anything fancy, just a gel manicure to help strengthen my nails. It was nice getting out, even if it was just to my local salon. 

Once home, I sat down and had a rest. I decided since I feel up to it I’d take my dog out for a walk. Today is my favourite type of weather, it’s not cold but it’s not hot and there’s a slight bit of wind. This weather is my favourite because I can be outdoors and not be majorly affected by the weather. I enjoy walking, if I could I’d walk miles but I can’t, so on days like today I really appreciate it when I’m out – especially if it’s my favourite weather too. 

I’m back home now, in my comfortable clothes. I’m going to make a hot chocolate and rest for the evening. 

Although I’m now tired, getting sore and have a still have a headache, I feel happy and satisfied with my day. I can go to sleep tonight knowing that for me, it was a productive and successful day. 

Walking Theo.

Sunday 18th September. 

It’s a bad day. I knew as soon as I woke up. My legs and shoulders were aching massively, my head was throbbing and I had joint pain. When you wake up like this, it’s rare you will pick up throughout the day, in fact you’ll more than likely just deteriorate. Which I did. 

It was my friends sons 1st Birthday today, I missed it. I feel pretty lousy about it too, I know what you’re thinking “it’s a 1st Birthday, the kid won’t even remember” but that’s not my point, my point is that due to this illness I miss a lot and sometimes it sucks. Today was sunny, or so I hear, I didn’t go outside to know if it was or not. So if I did go to the party I probably would have suffered more anyway. It’s a catch 22 kind of thing. 

I got my morning wash hours after awakening. Grim, I know, but I had to muster up the energy to do it. I brushed my teeth and afterwards sat back on my bed for around 20 minutes. Then I had to cleanse, tone and moisturise my face. And yes, I HAD to that because this disease has given me a complextion that resembles a pepperoni pizza or a dot to dot drawing.

I have spent my day in my room, doing absolutely nothing productive. I’ve been watching my family go about their day full of energy, oh how I envy that. It’s days like this I wonder what it feels like to have a body full of energy to do one task after the other with no breaks in between. I’ve been tired all day, that’s nothing new to me but today I’m extra tired. There’s no reason for me to be extra tired I slept for over 13 hours last night. No, I didn’t oversleep, that’s just Lupus. 

I’ve felt down today, again I have no reason to feel down. I just do. I don’t really feel like talking, I just want to lay in my bed where it’s quiet, warm and comfortable. Actually, when I think about it I do have a reason and it’s because I’m in pain. Everyone gets down when they feel like crap.

My appetite has been next to none, I’ve grazed on crisps, terrible I know. I did make soup this evening but I didn’t even have half of it. I just don’t feel hungry and there’s nothing I particularly crave eating. 

My headache dulled down earlier this afternoon but it’s been there all day. Now it’s built back up, and it’s going to my eyes. I hope it’s not the start of a migraine.

My joint pain has been moving around, at some points it was in my knees then elbows and so on. Currently it’s in my left elbow, right knee, my right thigh and my lower back is starting to hurt and ache. My jaw even aches, yep, my jaw. Just by writing this post my right wrist is starting to hurt and ache, so are my fingers. 

I’ve felt dizzy today too, everytime I stand up I get lightheaded and my vision goes a little funny. I got a warm bath earlier this evening in the hopes it would help my aches and pains but I got too lightheaded and had to get out after 10 minutes. 

I’m struggling to concentrate, whilst eating my soup I zoned out, you know when you stare at one object for a prolonged length of time and people wave their hands or click their fingers at you? I did that. I’ve done it several times today. I think it’s tiredness that causes the lack of concentration. If this post makes no sense or lacks grammar, you know why. 

I’m currently psyching myself up to get my teeth brushed and to get through the whole cleanse, tone and moisturise shenanigan again. I’ll get round to doing that in about an hour or longer. Until then, I’m going to lay in bed watching The Big Bang Theory and take some pain meds. 

Tomorrow is a new day, hopefully it’s a better day. I want to get some fresh air, hopefully take my dog out for a short walk, luckily he’s tiny so I don’t have to endure walks that are miles long. Maybe even FaceTime my friend overseas or pick my new glasses up. 

Goodnight, thanks for taking the time to read.