A week without immune suppressants…

It’s been over a week since my last dose of Azathioprine and according to my research they were out of my system within 2 days. At the time of stopping Azathioprine, my white blood cells were reading at 3.3. However, I had the levels re-tested again on Friday (13-04-18) and they are now reading 2.8. My GP, on Monday, assured me that the levels would return to normal quickly. Instead they have fallen, which concerns me but, I seem to be the only one concerned about it.

I was fully aware that I would suffer due to being under medicated and I knew Lupus would drag me down quickly. Today has been my hardest day so far. My headaches, which were greatly reduced by the Apixaban have returned, it’s like a constantly thud in my head and there’s sharp pain behind my eyes. My joints, especially my knees and elbows have pain radiating through them, I can’t take my strong painkillers because they induce headaches – which would just turn my current headache into a migraine. My feet and fingers have lost feeling quite a few times which ended in pins and needles.

Around lunch time, I had severe pain on the left hand side of my back, just under the ribs. It was so severe that it reduced me to tears and made me nauseous, it seems to be coming in waves but so far, nothing as bad as earlier today. It was as if someone was stabbing me.

Fatigue has been mounting up, I have no desire or motivation to do anything but sit or lay. My eyes sting and burn and small tasks are beginning to feel like impossible tasks. I’m starting to feel like a zombie, I look awake and alert but I don’t feel it.

It scares me that I could and probably will get worse, I’m heading into my second week being under medicated. You can feel Lupus pull you in but you have no idea how far it’ll pull you, and that’s the scary part. But, this is what happens when you give Lupus free reign to be a dick.

I have blood tests this Friday to re-check my white blood cell levels. I’m hoping they will have risen but due to the drop, I’m dubious that it’ll be enough to re-start the lowered dose of Azathioprine.

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My immune surpressants have been stopped.

On Saturday (07-04-18), I received a letter with the test results from my last Rheumatology appointment, bare in mind, the appointment was on the 15th March. The letter informs me that my white cell count remains too low to carry on with the Azathioprine but this is only a temporary measure. I need weekly blood tests whilst the levels return to normal and once it has I can resume the treatment but at a lowered dose of 125mg.

I spent Saturday feeling angry that I had been informed of this nearly a month after the appointment and in that time I had been unknowingly taking a medication that is potentially causing more harm than good. Not only did I feel angry but I felt a little upset because it sometimes seems like I can only get so far until I’m knocked back again.

I’m filled with dread because I’m now under medicated for Lupus, my treatment for now is just 200mg of Hydroxychloroquine and that’s not enough to stabilise me. I had thought about upping the dose to 400mg myself, but I realised that would be a rather stupid thing to do without a doctors consent. This morning, I went to see my GP regarding upping the Hydroxychloroquine dosage…it was a no go. It was a gamble anyway, he’s not in charge of my Lupus medication. But, there was a couple of other reasons: he doesn’t want to mess with my important meds and we don’t know how quick my white cells will take to return to normal, it could take as little as a week. But, that still doesn’t make me feel less dread, I’ve felt Lupus at full throttle before and it’s less than pleasant.

My last dose of Azathioprine was Friday (06-04-18) and according to my research, it should be out of my system by now. My GP and I decided my first weekly blood test should be Friday – a week from my last dose.

I’m not looking forward to climbing the blood test ladder again, I just can’t seem to surpass the 3 month mark and that’s frustrating to me. I’m just hoping that my levels return to normal quickly. My GP is going to call me with the results and if they are still low, I’m going to try and get in contact with my consultant in regards to upping the Hydroxychloroquine. I’m not prepared to be under medicated for longer than I need to be.

I’ll keep this blog updated with everything. But, if I’m honest, all I think it is, is my body not enjoying the higher dose of Azathioprine…life with a chronic illness keeps you on your toes!

Items/things that make life with Chronic Illness easier.

When I was diagnosed, I had to learn not only about Lupus and it’s manifestations but also how to make myself as comfortable as possible. When I’m not comfortable, Lupus strikes back at me causing unwanted suffering. Sufferers get a lot of help and recommendations from each other, which is exactly why I’m doing this post, here are the staple items in my life that I cannot live without.

The Heat Pad: This was at the top of my 2017 Christmas list, I originally wanted it to alleviate my often severe Raynaud’s. However, it has been used more to help my Lupus aches and pains. Overtime, I have realised my pain responds well to heat. The pad itself is soft, almost a fleece material and it’s flexible, meaning it can be wrapped around the affected joints. It has 5 heat settings, I usually have it on the highest setting (5). The pad is on a timer and after 3 hours, it will turn to standby mode and it’s also machine washable, which is great when your puppy decides it’s a great place to pee (evil eyes at Fifi). In recent months, I’ve had a lot of back pain which varies in severity, the heat pad has proved most helpful for this. I have of course used it for Raynaud’s, I place it on my feet when I can no longer feel them and I place my hands on it when they become too cold. It’s used daily and I highly recommend one if your pain responds to heat…or to just feel super cosy!

Hot Hands: Like stated above, my Raynaud’s can be severe, especially in my hands. If I go out without gloves, I almost instantly start to lose the feeling in my fingers. It causes great pain and distress, causing me to find any excuse to stay indoors for much of the winter months. I was going to a Christmas market, something I was excited but nervous for due to Raynaud’s, I found the Hot Hands online and decided to try them. Once you take them out of the packaging, the air starts to activate them, and the results were life changing. I was out in minus temperatures for a few hours, holding cold cans of Coke and with barley any Raynaud’s symptoms in my hands. Although the packaging states they stay hot for 10 hours, I’ve found they can last up to 14. I urge any Raynaud sufferer to at least try them, I couldn’t live without them and now I can leave my house knowing my hands will be warm and comfortable.

Heat Holder Gloves: I spotted these gloves on a cold snowy day whilst shopping. The thickness and 2.3 tog level pulled me in and I ended up buying them. Like the Hot Hands, they have been nothing short of a miracle. They feel like duvets for your hands, they are unbelievably soft and warm due to the fuzz in them and the tog level. I double them with the Hot Hands. I highly recommend for those who have Raynauds and to those who feel the cold.

Tiger balm: Think Deep Heat but stronger. There’s two versions, white and red, I use red which is the stronger of the two. I put it on my elbows, wrists, knees and ankles. I find it most helpful for throbbing pains, it definitely dulls it down. It works even better when doubled with the heat pad. I have tried Deep Heat and even freeze gel/sprays but none of those products come close to Tiger Balm. The only downside is it can stain light coloured clothing. But, I’d rather have stained clothes than sore radiating pain through my joints.

Memory Foam Pillow: It might sound odd, a pillow helping me. But, my memory foam pillow serves as a place to rest my joints when they’re sore and swollen, especially my elbows and ankles. I’ve found usual pillows flatten when I prop my feet upon it but the memory foam stays firmly in place.

Central Heating: A cold house will encourage my Raynaud’s to rear it’s ugly head and the cold air will cause my joints to seize and become painful. I have found 23.5 to be the perfect temperature, it constantly stays at this temperature and very rarely gets lower.

Making sure my medication is organised is a must for me. I also need to be able to keep track of what pills are running out and what isn’t, so I can put the correct medication through on my prescription.

The Bag: Once upon a time, it was used to hold make up and hair products for on the go. Now, it holds painkillers such as paracetamol and ibuprofen. I keep prescription pain meds such as Codeine and Tramadol in there too. It also houses eye drops in case I need them on the go. I keep it in my handbag but also carry it around the house. Most people have seen me with ‘the bag’…I’m the best person to come to if you have a headache!

The Note System: I either keep notes on my phone or in a note pad. I jot down appointments or meds that need re-stocking. Due to brain fog, I can’t rely on myself to magically remember, especially dates and times.

The Trolley: I found this trolley on Amazon and for a great price. I use the two top drawers to store my meds (although I’m really pushing the 2 drawer thing, I think I actually need 3-4). The first drawer is used to store my meds that haven’t been sorted into my monthly medication box, such as my Hydroxy, Azathioprine and meds to stabilise my other conditions. The second drawer is used to store painkillers, mostly prescription pain meds, but there is also back up Ibuprofen and Paracetamol. I like how the trolley is a subtle way to store medication, most people would look at it and think beauty products are stored within it, not medication.

Monthly Pill Organiser: This was another great Amazon find at a cheap price. I’ve used weekly pill organisers in the past, but I felt like I was constantly refilling it. It’s so much easier to have a monthly one, it takes around an hour to fill. I could never go back to a weekly organiser after having this.

Since being diagnosed with Lupus, I’ve had numerous skin issues. But, with a lot of trial and error I’ve found the perfect products to somewhat settle these issues.

Body Butters: I suffer with itchy skin, it feels like millions of insects crawling under my skin. In the past, I have scratched my skin until it bled. I have tried creams from the doctors but they either came with unpleasant side affects or had no affect. I started using body butters which oddly helped the most. I love The Body Shop body butters, my favourite being Almond Milk and Honey. I have to moisturise at least once a day to make the itching bearable or none existent.

Liz Earle: For some unbeknown reason, when I commenced my treatment for Lupus, I developed horrendous acne. I had tried everything I could within a decent price range but nothing helped and my skin was getting worse. I bit the bullet and bought Liz Earle. It definitely works and the price of the products reflects the quality. Due to how sore and broken out my skin was, my GP decided I should start antibiotics. I can balance my skin with the two, I still break out but my face remains somewhat clear and pain free.

Having a Chronic Illness can be isolating and lonely. I’m a person who enjoys their own company but being alone for most of the week can take it’s toll. When my family leaves for work, I can become anxious because I’m alone and overthinking. I have numerous things to occupy me, so I can get through the week without feeling too lonely. Here are few examples:

Netflix: I despise daytime television, I find it brain numbing so I sometimes flick to Netflix. I absolutely love documentaries and will sit through pretty much any (unless it’s the animal documentaries that show animals chasing and eating each other). But, it’s no secret that my favourite things to watch is true crime and anything medical.

Reading: Sometimes I like to read, if my brain fog and concentration allows. My mother has recently got me into thriller books. You can pass hours if you’re engrossed in a book.

Dogs: When I first got poorly, all I had was my little Theo. And because it was just me and him, we formed a unique bond. He wouldn’t leave my side and has licked the tears off my cheeks numerous times. Since then, we have added 2 more dogs. Just hearing them around the house keeps me settled. Animals are a great therapy and without having them around, I think my mental health would have declined.

Rheumatology appointment – 15/3/2018: a new medication.

I’m sure my appointments come around quicker each time. The time between my last appointment and this one was 4 months. This appointment was mostly centred around Antiphospholipid Syndrome.

As usual, the appointment started with the nurse for the usual checks. My weight and blood pressure were fine, but my urine is showing a possible infection. I’m unsure if I still have protein lurking in it, the nurse was concentrating on the possible infection.

As stated above, this appointment was mostly about Antiphospholipid Syndrome, I’ve never had an appointment that was nearly dedicated to this illness, people assume (and I did for a while) that all my symptoms are down to Lupus. In all honesty, this was an odd appointment to me, I was barley asked any questions. He asked how I felt since the upped dose of Azathioprine and when I replied “honestly…I feel no different”. And, that’s when the appointment changed direction to Antiphospholipid.

It isn’t new knowledge to me that my consultant wants me to take warfarin or something very similar to control my APS. For over a year, he’s believed my headaches are tiny blood clots on my brain that fizzle out on their own. For some reason, I have a great fear of Warfarin, the thought of taking it petrifies me. Which has resulted in a firm head shake at my consultant numerous times, essentially, I have denied treatment.

However, at this appointment, we found a middle ground. A medication called Apixaban, which has replaced my dose of Aspirin. Apixaban is an anticoagulant, which means it will greatly reduce my risk of DVTs and PEs. I take two 2.5mg tablets a day, one in the morning and one at night. My consultant believes the symptoms that aren’t being relieved by my Lupus meds, aren’t Lupus symptoms at all, but symptoms of APS. We’re hoping Apixaban will help relieve headaches and some degree of the fatigue. I have been given a months supply to see how I cope on it. The meds come with an alert card that needs to be kept on me at all times.

Another point of discussion was the back pain I’ve had for the last few months, it differs in severity. I also mentioned that I can do my first wee of the day at around 4pm. He said the urine sample I provided will be sent to the labs for further testing. He also wanted to check my full blood count, the last couple of times my blood count has been slightly low. If it continues declining, my dose of Azathioprine will be reduced back to 100mg. He will write to me with the results of both, but the nurse recommended I ring my GP to check if I need antibiotics, which she said I most likely will.

He scheduled us to meet again in 3 months time.

New Year, New Update.

I firstly would like to apologise for my lack of writing but Christmas, New Year and flares got in the way. And, if I’m honest I’ve suffered a bit of writing block, I have attempted at least 4 posts but failed to finish and post them. I would read them back and think “no, that’s too boring” or “that’s too long” and even “that’s just poorly written”, maybe I’m too self critical.

My last post was December, it covered my Rheumatology appointment and my dose of Azathioprine being increased from 100mg to 150mg. My blood tests had been moved from 3 monthly to 2 weekly. The results have all been fine and my body seems to be accepting the higher dose and as of the end of January, the blood tests have moved to once a month. I haven’t noticed a difference, I haven’t had any side affects but I also don’t feel better. However, and I have covered this before, Azathioprine can affect teeth and in January I had another wisdom tooth pulled out and 2 fillings…so I say I haven’t had any side affects but I can’t be too sure that the dental work needed was a result of the increased dose.

Although I say I don’t feel better, the dose was increased at a rather busy period of time…Christmas and New Year. I do like Christmas, I really do but the run up to it is quite literally exhausting and painful. There’s the shopping, which resulted in carrying multiple heavy bags that pulled on my joints – thinking back, I had to take naps after every shopping trip, they all floored me. Then there’s the wrapping, which seized my back and fingers up, just sitting at a table on a wooden chair caused mayhem to my body. And, finally getting out and visiting people with their gifts…an enjoyable time but exhausting. I spent New Year with my boyfriend and his family which was lovely but unfortunately by New Years day, the whole month had officially caught up with me and I was at the point of pain and exhaustion that I just wanted to curl up and cry. I had started flaring on Boxing Day, so to make it to New Years Day before feeling like that was quite the triumph. Despite the flaring, I had a lovely festive period with my nearest and dearest.

I haven’t got any expectations for 2018, I’m just taking it as it comes, which I’ve realised is the best thing to do when you have a chronic illness. I haven’t set any New Years resolutions, I never stick to them but I have made some slight changes. My first change is writing the symptoms I’ve had that day in a diary, I’m hoping it helps me to see a pattern in symptoms – which I can then tell my Rheumatologist, which in turn might help future treatment plans. Other recent changes include taking the supplement Evening Primrose and increasing my dose of Vitamin D. It was last year that my GP had told me to take it, but whilst in Boots, I found a higher strength of it and to my research, during winter you need a higher dose. Although, I will more than likely keep myself on this higher dose all year round.

I have recently had some new symptoms. In recent months I have a dull pain almost daily in my shoulder, usually my right but it often spreads to the left. I recently had a bout of what I presume was vertigo, I was sat eating and all of a sudden my hearing went, the room was spinning and I felt so hot…it honestly ruined my meal and I bloody love chilli. I had to go and lay down and that’s when I noticed my hands were trembling and I started to feel nauseous. The next new symptom prompted some worry (95% of the worry stemmed from my mother) but it’s pain in my back that can sometimes spread to my abdomen. When I pointed the location of the pain my mum said “that’s the kidney area, that’s concerning me!” and she even mentioned going to A&E when it was making me walk hunched over…but I refused due to my blood tests for kidney function being fine, I also tested my urine and it came back fine. I still get the pain daily, and since nothing is flagging up in tests, I think it’s just another Lupus thing that I’m just getting accustomed to. I can see why she worried though, kidney complications are rife with Lupus patients.

This past Sunday was hard for me, I found a new dog walk for my boyfriend and I, it was a woodland walk but I didn’t research it enough and it turned out to be rather long and quite hilly in places. We turned back when my left hip started to hurt and on the way back my knees and elbows started to hurt. I began to feel as if I was going to faint, a sensation that frightened me, it felt like my legs wouldn’t carry me further and that I would just keel over at any given point…away from home. That night I sat and held back tears because I took my mind back to when I was healthy and thought “Once upon a time, I would have finished that walk, we didn’t even make it to the half way point. I’m still paying for it now, my joints have sharp pain radiating through them, I ache all over and my head is pounding…not to mention the fatigue.

I shall leave this update here before it gets far too long and you lose interest. I will be putting my brain to use and thinking of new posts in the mean time.

 

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.

The Daith Piercing: has it worked?

My conclusion regarding the effectiveness of the daith piercing is long over due, it’s been pierced for nearly 2 months. During that time, I haven’t encountered any major issues, in the last week it has felt a bit sore but nothing excruciating, more of a bruised sensation. I bought a bottle of TCP to clean it and it’s been fine since.

Since we’re on the subject of cleaning, I’ll state now that it has been a truly awful piercing to clean. You cannot see where you’re putting the cotton bud, which resulted in me getting annoyed with myself and having someone else clean it for the first week. I was told to use cooled kettle water and salt to clean it, I opted to use Epsom Salts rather than normal salt. I had to use the salt water for two weeks and cooled water alone for a further two weeks.

Healing wise, it’s doing well, a week after it being pierced, I totally forgot it was there which resulted in “oh shit, I need to clean my ear” moments. The piercer told me I wouldn’t be able to sleep on it for a while, but 2 nights into it being pierced, I was sleeping on it fine. It caused no pain or discomfort and in the first week, it bled once but it hasn’t since. Cleaning aside, it has been one of the easiest and pain-free piercings I’ve had. And for those wondering, you can still use in-ear headphones with the piercing.

But, has it worked? I’m pulling an ‘erm’ face whilst writing this bit and as you read on you’ll see why. In the first 2-3 weeks, I still had headaches but oddly enough, only on the right side and nothing on the left side (it’s the left side that is pierced). However, I then suffered a bout of insomnia which snowballed me into a long flare. The flare was so prolonged from my usual flares that I asked the question of “am I even in a flare or has my lupus just got worse? Can that even happen?”. The headaches started back up on the left side during the insomnia period, but I gave the piercing a pass because the headaches were the result of exhaustion. However, after being prescribed sleeping tablets and sleeping a decent amount, the headaches didn’t disappear and I’m still suffering some degree of a headache daily.

BUT, and this is why I’m sat on the fence, since getting the piercing, I haven’t had one migraine. I usually have at least 1-2 a month that can last days but it’s been nearly 2 months without one. Sure, I’ve had bad headaches but nothing that requires me to stay horizontal for days or makes me feel like I’m looking directly at the sun when there’s a light on. But, this could just be a lovely coincidence because if it’s stopping migraines, why isn’t it stopping headaches?

My conclusion is that it might be affective if you suffer from migraines alone. But, let’s be real, I have several auto-immune diseases, a piercing was a long shot if medications weren’t working. If you were debating the piercing, I’d still try it because what doesn’t work for me, might work for you.

For the sake of £20 I gave it a go. I have a nice piercing though, so it isn’t a loss or waste of time…every cloud has it’s silver lining and all that!

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.