Azathioprine, steroids and symptoms resurfacing.

I went to my last set of blood tests (Friday 11th May) with low expectations of any change to the results. Tuesday 15th, the doctor rang me and if I’m honest my first thought was that something else had gone wrong. But, he called with good news, my white blood cells and neutrophil levels had returned to normal! By afternoon, I was nearly skipping into the surgery to pick up my Azathioprine, the dose has been reduced from 150mg to 125mg. I can’t say for definite why this all happened but I believe my body just couldn’t tolerate the higher dose of 150mg. Before all of this happened, I thought Azathioprine was borderline useless. It wasn’t until they were abruptly stopped that I realised just quite how much they helped.

Thursday 17th: I received a call from my Lupus nurse. It basically consisted of her telling me I could restart Azathioprine and my blood tests can go from weekly to fortnightly. I happily cancelled my blood tests for the following day. Weekly tests get beyond tedious.

Friday 18th: I reduced my steroid dose from 15mg to 10mg. I will remain on this dose for just 2 weeks before reducing again to 5mg. The first side affect I encountered was hunger and I can fully understand why people gain weight – it’s insatiable. You could have put an extra large mix grill in front of me and I’d have probably demolished it (I never eat mixed grills, I don’t think I’ve ever ordered one). But thankfully, the hunger feeling seems to have disappeared. The next slightly bizarre side affect was and still slightly is, a sore tongue. This only really bothered me when I drank cold drinks or when I was cleaning my teeth. The final side affect that still comes and goes is feeling HOT. It mostly happens at night which disturbs my sleep…not totally helpful for someone who can’t sleep at the best of times.

When I first started steroids, I felt incredible. I felt like I could do task after task without becoming instantly fatigued or sore. However, last week we had family over which put me out of my usual routine and I was doing too much to be able to cope. My energy levels rapidly declined and small tasks started to feel like I was being asked to climb a mountain. Body aches were the next symptom to resurface, it was like I had been dipped in concrete, an overwhelming heavy feeling. My headaches had reappeared, with sharp pains around the eyes. And, the dreaded joint pain started to radiate through my joints, even the tiny joints in my feet hurt. On Saturday, I felt like my body was about to give up, just walking to the toilet was too much. By the afternoon, I had no choice but to go back to bed. I slept all afternoon, even through my Grandfather and Dad drilling through the wall below my bedroom. It was heart wrenching and frustrating to go from feeling well on steroids back to feeling so sore and poorly. It just proves how powerful Lupus can be and if it demands to be felt, it will.

My joints are still very sore and I’m still very fatigued with body aches. But, I’m going to use this week to relax and recover. It can take anywhere from 6 weeks to 3 months for Azathioprine to fully kick in, obviously I’m hoping it doesn’t take long at all. But, we’re at least back on the right track.


Steroids: what are they like?

I’m nearly at the end of my first week on steroids, it’s time to give my initial thoughts on the dreaded medication. When I initially started them, I spoke to a few people in the chronically ill community about their experiences with steroids. There wasn’t one person who wanted to be on them, despite knowing they would help. Steroids work by reducing inflammation and they also suppress the immune system – which is why they are commonly used for auto immune diseases.

Steroids tend to raise the level of glucose and sugar in the blood and they also cause an insatiable appetite – those combined can lead to the side affect that nobody wants: weight gain. I’m being strict with what I consume, carbohydrates turn into sugar, so anything with a high carb content has been eradicated from my diet. The only carbohydrates I eat is what naturally occurs in fruit and vegetables. I have significantly upped the amount of protein I eat too. It’s a complete change around for my diet, I usually consume more carbs than I do protein. Despite constantly feeling hungry, I haven’t caved to it yet. I ignore the hunger pangs and only eat at meal times…I guess that’s where being stubborn comes in handy. Out of everything I’m used to eating, all I miss is a cup of tea with one sugar and a handful of biscuits.

However, I am suffering from two side affects. The steroids are making my body temperature rise and I feel unbearable hot, this mostly happens at night but it has occurred in the day time too. The second side affect is disrupted sleep (as if my sleep couldn’t be anymore disrupted), I definitely think the body temperature has a part to play in this too. I constantly wake up through the night or it takes me hours to settle down and sleep. That being said, I’d rather have those two side affects than any others.

Despite having disrupted sleep, the steroids have worked wonders for fatigue. I seem to be able to do a little more in the day time. Not only that, but I can concentrate on things better and my brain fog isn’t as bad. However by late afternoon I start to become tired again, but it’s probably down to me taking advantage of not being so fatigued. I’m still having joint pain, but it’s not as constant and it usually starts in the early afternoon and it intensifies a little by early evening. The steroids haven’t worked for my headaches yet, but whilst reading the side affects, it said they can cause them – so I’m not entirely sure if it’s a side affect or lupus.

I would say that so far, the only great improvement I feel is the fatigue. Which is okay with me, fatigue is a symptom I can’t stand or get used to. If my consultant decided to keep me on the steroids for longer than expected, I wouldn’t complain for this reason. But, there’s still time for the steroids to start taking affect on the other symptoms – time will tell. My recent blood tests show that my neutrophil level is still low, so I still don’t have a clear idea of how long I’ll be on steroids.

I’m (reluctantly) on steroids.

The break from Azathioprine continues, if I’m honest, it’s lasted much longer than I had anticipated. And, to be frank, it’s been an utter nightmare. It feels as if nobody is communicating with each other, it’s almost like they have no idea what’s happening with my treatment plan.

My Lupus nurse called me on Monday 23rd April, to tell me I had to stop Azathioprine (by this point, I’ve been off the medication for 2 weeks). She told me that my white blood cells have returned to a normal level, but my neutrophil level remains low. She said she was going to talk to my consultant about restarting Azathioprine and that she would call me back in a few days. By the Friday afternoon, I hadn’t received a call which prompted me to call her – it went to her answering machine.

Wednesday 2nd May: there still was no call back from my Lupus nurse. I tried to contact her again. It went to her answering machine but this time there was a message alerting me that she was on annual leave until next week. To get a message to my consultant, I next tried calling his secretary and hallelujah, she answered! I had to tell her the full story: no Azathioprine and how long I’ve been off it, low white cells and neutrophils, frequent blood tests, Lupus nurse called and then didn’t call back and finally that my symptoms are progressively worsening from being under medicated. She noted everything I said and told me she would speak to the consultant and call me back.

Whilst I was waiting for the call back, I logged into my patient access app and looked back at my neutrophil results from past to present. I realised they’ve been low before and fluctuate quite frequently:

Due to this realisation, I was getting pretty cocky that I’d be back on Azathioprine that night. The secretary called me back, she re-confirmed that my white blood cells are back to normal but my neutrophil level remains low. And, because of that, the consultant is continuing the Azathioprine ban. But, he would like me to go on steroids to control the worsening symptoms until the neutrophils are back to normal. I paused slightly and told her “I don’t want to take steroids”. I mean, bless this woman, I’m talking to her like she can change my consultants decision. She sounded quite sympathetic and told me “Doctor wouldn’t prescribe them if they weren’t necessary”. I eventually agreed to let her fax the care plan to my GP. She told me to call the surgery in 15 minutes to see what time they’ll be ready to pick up.

I started sorting the laundry out and before I knew it, I was crying because I REALLY don’t want to take steroids. I started to wonder, why everyone is suddenly making a song and dance about low neutrophils when they’ve been low in the past? I logged back into the patient access app, this time I looked at my white blood cell results past and present – they also fluctuate and in the past, both my white cell count and neutrophil levels have been low at the same time. But, I remained on Azathioprine.

An hour passes by the time I called the GP surgery, there’s no fax – they said to call again in an hour. I kill a further 2 hours and call again but there’s still no fax. By this point, after spending much of my day chasing people up and my patience hanging by a thread, I told them I would call back in the morning.

Thursday 3rd May: I called the GP surgery again and there was no fax. I would class myself as a chilled out person, I don’t get annoyed easily, but this situation was really pissing in my cornflakes. I called the secretary back, she was annoyed too. She sent the fax within minutes of getting off the phone to me and also sent a hard copy. She said she would call the surgery and re-fax the care plan and told me to call them again in 10 minutes. I left it an hour and when I called back, praise the Lord, they had the fax!

I’m not scared of the steroid itself, it’s the side affects: moon face and weight gain. I only have one logical explanation for this fear, the eating disorder I suffered as a teenager. I have been told I look tired and my under eyes are becoming dark, so the worsening fatigue and pain is starting to show – steroids are the only thing on the table for me at the moment so I have to (reluctantly) accept them. Mum and I researched what the best diet is whilst taking steroids: low carb and high protein. Although my dose is low, I’m not taking the risk and eating how I usually do. However, I have made it clear that if I don’t like them, I won’t keep myself on them.

I seriously didn’t think it would drag on for this long or that I’d end up on steroids. I’m at my wits end. I didn’t realise how much Azathioprine did for me until I was taken off it.

The dose: 15mg for 2 weeks, then reduce to 10mg for 2 weeks and finally to 5mg for 2 weeks.

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.

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.

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!

Lupus and being abroad: day 1 (17/6/17)

Hello from beautiful Turkey! The weather today has been glorious, reaching around 33°c. This is my first post on how I’m surviving in this heat, because as most of you know, Lupus and heat don’t tend to mix well. 

I arrived at my hotel at 4:30am, although it was 2am UK time…and I had 45 minutes sleep because I’m apparently an overgrown excitable child. The flight was, meh, it was okay. I don’t mind flying, in fact I love take off but that’s about it, after an hour I start to get sore and extremely uncomfortable. Mix that with screaming children and a screaming need for nicotine (I’m an ex-smoker and I’m probably too addicted to my e-cigarette) it’s just not a fun situation to be in. But, needs must if you want to end up in a beautiful place like this…

7am today. I watched the prettiest sunrise.

So, to deal with the intense heat? Water, and I mean, chug so much water down that you think you might explode. Surround yourself in water, get in that sea and pool…although I found the pool pretty cold so I preferred the sea. This hotel has two pools so I’m planning on seeing how the other is tomorrow. 

I also applied factor 50 suncream regularly, topped with a factor 30 facial sunscream and sun protective balm for my lips and nose…if you ever need suncream, come to me. 

I took painkillers often as well, however they haven’t stopped my headache which I think is a combination of fatigue, heat and generally just having a disease that gives the gift of headaches regularly. My left ankle started to seize up later this afternoon, mum thinks it could be a side affect of the glamorous flight stockings I had to wear. They are so tight and the tighest point is at the ankle. Since I also have Antiphospholipid Syndrome it’s crucial I wear them as flying is a big risk factor for me developing a DVT. 

Overall, I’m pretty happy with how I managed my first day. There was some points of the day I thought “this is too hot, if I don’t cool down asap, I think I’ll die on this lounger or just disintegrate into it”. I’m not naive and I expect some days to be tough in the heat, but I’ll carry on with what I’m doing because for the most part, it works. 

I don’t plan to update this blog everyday with how it’s going because I think it would eventually get tiresome for you to read. However, I am planning a to write more than just this and if a day doesn’t go quite how I like, I’ll let you all know. 

I have to get a shower now because my hair and body is full of salt, but I’ll leave you with some pictures of my day! 

Still alive…didn’t disintegrate into my lounger.

View from one of my many loungers today!
Another view…from another lounger!

My diagnosis, part 2.

I did a post about how I was diagnosed but it mainly covered how it physically affected me. I wanted to cover how receiving those diagnosis’ emotionally affected me and how I came to accept this new aspect of my life. I try my best to keep this blog candid, which means sometimes I have to push past the nervousness of revealing things I would generally keep to myself. When it comes to my illnesses, I don’t show any emotions such as anger, crying etc to anybody. It’s just something I prefer to keep to myself. 

I was prepared by my family, friends and my GP to receive a Lupus diagnosis. I went to my first Rheumatology appointment with no expectations of a diagnosis, I wasn’t naive and knew a diagnosis could take months to years. I didn’t have to wait, I was diagnosed in that first appointment. I wasn’t shocked and I wasn’t upset. When the doctor said I also have Antiphospholipid Syndrome and Sjogrens Syndrome, I was shocked. At no point was I told to prepare for that. My doctor was telling me all sorts “you need to get to a pharmacy as soon as you can, you need to call your Lupus nurse, if you fall pregnant you need to contact your OB immediately, do you understand?” I didn’t understand but I said I did. I stopped paying attention to him after he told me I had Antiphospholipid Syndrome, I’m not bothered about Sjogrens, it doesn’t massively affect me. I left his office with a piece of paper that I had to give the nurse and she took 5 tubes of blood. I remember looking at my dad and joking whilst having my blood taken “I have more illnesses than you now, I win”. I entered the hospital as Emily with a straight forward life with no complications and I left as Emily who was officially medically complex. 

I couldn’t get to a pharmacy, I left the hospital after 5pm and they were all closed. I was visiting family and friends on the weekend with my mum so my dad dropped us off at the train station. I read the leaflet my doctor gave me over and over. My mum asking me numerous times if I was okay. I always replied yes. She was on her phone, I think texting family about the appointment, she kept looking over at me though. I was quiet, trying to get my brain around how I now have 5 illnesses. The leaflet covered everything from kidney problems, lung problems, strokes, heart issues to how to look after yourself. I remember thinking “Oh I should probably stop smoking” and I did, I might have had the odd packet of cigarettes whilst in the process of stopping but I eventually did. 

When we arrived at my Aunts house, they were talking about it and again I was asked if I was okay and I said “yes, I’m relieved”. I wasn’t lying, I was okay and I was relieved, I was just shocked and still confused. The next day we went to a pharmacy and mum pointed at a medication box, she said it’s ideal to have one. I didn’t want one, I didn’t want to be stood in a pharmacy putting my first of many prescriptions through. I picked one up though, I got my medication and sorted them out in my medication box, she was right they are ideal. 

I wouldn’t say it affected me until a couple of months later, I didn’t realise but my family did. I was quiet, spending more time alone and I wasn’t my ‘happy’ self. I remember the first time I cried about it, it was probably 2 months after my diagnosis. I was in the bath and I just sobbed because I didn’t want this life, I questioned why me? I thought I must be a terrible person to derserve this. I wanted so desperately to see the old me, what would she be doing now? She would probably be out to dinner with friends in fits of laughter without a care in the world. That was probably the moment it hit me. 

We arrived at my second Rheumatology appointment but we were early so mum and I sat in the hospital cafe. She said she wanted to tell me something but asked me to not be offended and that it was recommended by the therapist at her work. She had ordered a ‘self help’ kind of CD. I told her I was fine and I didn’t need help. Which looking back was rude, she was trying to help me, she could obviously see me slipping into some sort of depressed state. 

Throughout all of this I was in limbo with my job, my employer kept sending me to an occupational health therapist. I knew I was about to lose my job, I just didn’t know when. That’s one thing that has affected me the most, not being able to do the job I truly love. It’s not to say that in the future I won’t be able to go back to it, but for now I can’t, it’s too physically demanding. I miss it, but how can you responsibly look after someone else when you’re unwell yourself? The whole process was really drawn out but earlier this year I was officially resigned on medical grounds. 

It took me a while to pull myself together from it all, I realised this can’t be changed, this is life now and I had to accept it and it was time to move on. I stumbled across a quote which I love:

“As you waste your breath complaining about life someone out there is breathing their last. Appreciate what you have. Be thankful and stop complaining.”

It put a lot of things into perspective for me and it made me think, if this experience has taught me anything it’s that we don’t appreciate the things or people we have. Dealing with Lupus and the other illnesses is hard physically and emotionally but there are people out there fighting a harder battle. I think it’s very easy to feel sorry for yourself and listen to what your mind tells you, but I now know I’m not a terrible person and I didn’t deserve this. 

So the best way to cope? Stay humble with what you have. Make sure to smile often and always keep your humour.