Hidden Illness, Hidden Judgement.

I’ve been told “everyone is judged” multiple times since being diagnosed with Lupus and it’s a statement that will always get on my last nerve. I agree, everyone is judged at some point in their lives, but it’s usually over things they can control and have the power to change. We are judged for every little thing we do or do not do, unless you have been judged for something beyond your control, left to feel like you are worthless, useless and at the bottom on society, do not tell me “everyone is judged”. I will not accept it and I will not accept it from a person who has never experienced life with a debilitating illness or disability.

In a bittersweet way, I have experienced life being both healthy and sick. I say bittersweet because I can take my mind back to how easy life was and how I used to be able to work long hours and do task after task. It wasn’t until I became sick that I realised that the world is catered for able bodied people and that society is judgemental. Earlier this year, I went to pick my prescription up, an abnormally large bag of pills for a 22 year old. I got on the empty bus with 3 other people, with my prescriptions in hand and sat on the seats that are dedicated to the elderly and disabled, to which a woman loudly said “I always save those seats for those who need them” to another passenger. That was my first experience of being judged by a stranger in public, the only reason I used those seats on that day was because I was in sheer agony, agony that cannot be seen. If I was in a wheelchair, would she have said the same thing? If I had crutches, would she have said it? I have heard many stories from others who suffer invisible illnesses, stories about how they are harassed and embarrassed by strangers when they use a disabled parking space despite being a blue badge holder, because the stranger can’t see anything wrong.

Judgement sticks with us, like it has for me with the woman on the bus, it doesn’t matter how much pain I’m in, I will now no longer use the seats for disabled people even though my illness is covered by the Disability Act and I have a right to use them. It imprints fear into us, there’s thousands, probably millions of invisible illnesses sufferers that choose not to leave their house for the fear of being judged, harassed and embarrassed by people who they’ve never met, by people that could never fathom the enormity of their health issues. The woman on the bus looked at me as a healthy but lazy 22 year old woman who couldn’t be bothered to walk to the seats for able-bodied people.

I’m tired of it, sick and tired of people being judged because they are different. People have lost the ability to have compassion, we are a self-centred, unsympathetic and judgemental society. I was watching a day-time programme and they had a woman on with one arm, she stated parents shy their children away from her in case they find it scary. Why aren’t parents teaching their children that no two people are the same? Why are they not teaching their children about disabilities? Why as a society are we tolerating this behaviour to the sick and disabled?

The title of this post says ‘hidden judgement’ because, unless you’ve been through it or have a close friend or family go through it, it is hidden. Able-bodied people are oblivious to it, why wouldn’t they be? They aren’t sick or disabled, the world is an easy place for them. They don’t have to strategically plan days out or holidays, making sure the establishment has disabled access and if the transport is sufficient for their needs. Their lives don’t revolve around countless hospital appointments, medication and never ending pain. They can leave the house without fear of being embarrassed by strangers. But, it is an issue to them and an issue that can be helped if they just opened their narrow minds. It isn’t the able-bodied people, the wealthy or those who claim to be understanding that I see offering a helping hand to those in need, it’s the people with nothing but the clothes on their backs or the people who are at breaking point with their own issues that offer that helping hand or shoulder to cry on.

I don’t understand how people shy away from disabilities or illness, is it because their scared and don’t know how to confront it? There’s nothing to confront, you treat the disabled or sick person how you would anyone else. How difficult is it to not judge a person? What happened to equality? All they want is to be treated the same, to not feel like their at the bottom in society and to not live in fear.

I now understand that it’s not healthy, able-bodied people that make sacrifices but those who suffer illness or disability. Frightened to cancel plans with their own family or friends for the fear of upsetting them, forcing themselves through social events or activities when all they want to do is be within their home comforts with painkillers. I have seen people get frustrated and angry with me for cancelling plans, because they cannot see the reason I have given for cancelling.

Living with illness or disability is isolating and often dark enough without the added judgement from strangers or even people close to us. As a society we need to embrace and celebrate what makes each individual different, to not judge people for their differences and to treat the ill and disabled how you would treat anyone else.

 

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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!

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

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. 

Tuesday 7th February, 2017. 

Someone needs to give me a lesson in how to stay still whilst in flare. I did some basic jobs in the house today and made myself a lot worse. I guess sometimes I just want to feel like I’ve done something and helped out. It’s hard going from a full time job that’s very fast paced, one job after the other with barley time for a break to well…nothing, absolutely nothing. Everyone else in my house is out working and I feel like they should at least come home to a clean house. I know they wouldn’t bat an eyelid if I didn’t do it, but I just keep doing it. I like to help, that’s my problem. 

Yesterday was a terrible day, my family even said I look really unwell. It has to be a bad day when people can see the invisible illness. I had joint pain, a headache (I’ve actually had a headache for a few days now) and I was exhausted. I was at the point of exhaustion where I was asked if I had taken my strong painkillers that take me off to a different planet. I hadn’t taken any because they induce headaches and I already had that problem. I sprung awake at 1:30am with killer pains in my back/sides. It felt like I was being stabbed repeatedly, I couldn’t lay back down because it made it worse…that’s when I gave in and reached for my strong pain killers. They helped, they took the stabbing pain away but I was left with a throbbing pain. I managed to get back to sleep, probably the pain medication mixing with my exhaustion knocking me straight out. 

Today, isn’t better. I still have the pain in my sides, I keep getting the sharp pain on and off but the throbbing sensation is still there. I still have joint pain and I ache like I’ve just ran the London Marathon. I’m still very much exhausted too. My headache isn’t like my usual headaches, well it sort of is, I get an hour of sharp pain but it’s mostly like a fuzzy head or feels like my brain is swelling…I can’t describe it. In all honesty I feel worse than I did yesterday. 

But oh well, I’ll just go where the tide takes me and wait for it to pass.