The Lupus Awareness Month Diaries: Day 31

http://www.sickoflupus.co.uk

Hello,
First, I’d like to say thankyou so much for supporting the blog during Lupus Awareness Month. I also know that many of you have been reading every single day and so thankyou very, very much.

The Sick of Lupus gang, our friends and family have been fundraising for years. My loved ones are just incredible. They’ve walked over 200 miles for Lupus and cycled from London to Paris. I have a friend who put on an incredible fashion show and party for Lupus UK and we’ve done shows, assemblies, charity gigs, auctions, cake sales, sponsored events, mountain treks, you name it.

I’m not well enough to do the really big events I’d like to. I’d love to take on a huge physical challenge but that’s never gonna happen now is it?!

However, I realised that spreading awareness is just as crucial as raising funds. I thought it would be a good idea to chronicle my month and share the challenges of life with illness. No two Lupus patients are the same but I feel like we can all relate to each other and receive comfort in knowing we aren’t alone, paranoid or crazy!

I also wanted the friends and family of people with Lupus to hear about the illness from a different perspective. Many will underplay their symptoms to avoid hurting friends and family and so I wanted to be as honest as possible.

The reason the Sick of Lupus team do the blogging, Twitter, Facebook and the website is to give a voice to an important cause that doesn’t get the attention it deserves. The money that is ploughed into other causes leaves conditions like Lupus in the dark. The truth is, Lupus does debilitate, it’s incurable and people die. What other reason do I need to support the cause?

I’m still totally devastated that I have this disease. I do feel robbed of my life and I feel frightened all the time. If I do have a good day, I can’t enjoy it because I’m always thinking that any minute now, I’m going to start hurting or feel tired. I always think about the future and I worry what life will be like as I get older. I’m aware that every day that I’m confined to my house, is a day I will never get back. However, doing my bit to help spread awareness, makes me feel like I’m turning a bad situation on its head. I’d be happy to know that I’ve helped just one person by writing or speaking about Lupus.

It’s not to say that I’m Miss calm and collected. In most situations, whenever I’m speaking about myself and Lupus, I can feel the tears coming. I’m still trying to come to terms with my diagnosis, even after 10/11 years. I don’t think you can ever fully accept that you’ll never be ‘well’ again. That’s the thing about Lupus, it’s not the flu, in 5-10 days, you won’t be better.

I’ll continue writing on a weekly or fortnightly basis and try to share any useful info I find. I’m also doing a Fibromyalgia coping skills programme at my hospital. Any info I can share from that, I will.

So that’s my bit done for Lupus Awareness Month 2014.
Wishing you all the best for 2015! Be sure to stay in touch with us via all the social media outlets and the website!
Until next time!

X

http://www.sickoflupus.co.uk

IMG_4205-3.PNG

The Lupus a Awareness Month Diaries: Day 30

http://www.sickoflupus.co.uk

Hello!
I can’t believe I only have one more of these to write after today! I hope you’ve been enjoying them or atleast found parts of it useful/comforting.
After Lupus awareness month, I’ll continue writing but I’ll probably post weekly or fortnightly. You can also keep updated via our Twitter, Facebook and the main website.

Today has been a good day. I’m experiencing a lot of discomfort and sickness but emotionally, things are good today. I feel more optimistic than I have been feeling lately.
I spent the evening with my family last night and it was real quality time, that really lifted my spirits.

I had my usual hallucinations last night (I’d love a camera in my room so I could watch exactly what I do in my sleep and how I react to them. It might also explain how my curtains ended up open! I’ve also woken up in the hallway before, thank god I don’t have stairs!)

I was so fatigued this morning and I could not get up out of bed. My body felt heavy and I didn’t posses the strength to move. I think I finally got out of bed close to 10.45. Yesterday was quite draining so I don’t feel bad about sleeping in.

As my holiday gets closer, I’m trying to keep that positive momentum going. I bought a coat today and it made me really happy because it’s my ‘New York coat’. Yes, it’s just a coat but if you’ve read my earlier posts, you’ll know the stress involved whenever I go shopping for clothes!!

I’m also trying to stay positive in the hope that my body cooperates with me, especially in the upcoming weeks. I really hope that I’m physically well enough to enjoy my time away, even though it’ll be be a very Lupus conscious trip. I certainly won’t be parading down 5th avenue, more like a gentle stroll with lots of intervals to rest. Either way, there could worse places to sit and watch the world go by!

Til tomorrow,
X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 29

http://www.sickoflupus.co.uk

Good eve,
This morning I went to rheumatology to discuss my medication. We’ve decided that very soon I’ll begin new treatment with a drug called Rituximab.

“Rituximab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells.” (Macmillan.org.uk)

I’ll have Rituximab intravenously over 2 sessions and each session is around 6 hours minimum.

I had Rituximab around 2 years ago but it wasn’t a big success. As you’ll be aware, the options for medication are pretty bleak. In my case, the other options carry high risk of cancer and infertility. Not fun options for a young girl who definitely wants children in the future.

Although I’ve had Rituximab before, I’d forgotten that it was a cancer drug. I feel really grateful that I have this option available to me, but I feel really uneasy knowing that this powerful therapy will end up in my body.

The main reason I have to begin new treatment is because I’ve been taking steroids for such a long time. 10/11 years is quite a long time to be taking steroids and I’m personally sick and tired of taking them. I hate the body I’ve been left with.

As I’ve mentioned before, I suffer with severe bouts of depression and anxiety but I don’t think I’ve spoken to you about the hallucinations I get. I’d say 5 out of 7 nights, I have the most vivid hallucinations (visual not sound) and it’s really traumatic. It’s one of the main reasons that I never get a good nights sleep. My doctor thinks that’s it’s caused by Lupus more than a side effect of medication. I’m hoping the Rituximab will help treat all of these symptoms.

Today was super informative and I had a lot of tests including bloods and a chest X-ray. I have a great team of people looking after me so I know I’m in great hands. However, it’s typical for me to worry and feel anxious.
I’m going to try really hard not to over think all that’s happening. Fortunately, I won’t have to wait too long for my appointment, I’ve been told I should expect an appointment any day now!

Til tomorrow,
X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 28

http://www.sickoflupus.co.uk

Hi everyone. It’s a very short blog post today. Last night I had an overwhelming feeling of sadness and got caught up in the stress of illness and all that comes with it.

I’d been ok for most of yesterday but then things began to hurt and swell and seize and ache etc etc.
Instead of being upset about the pain, I got upset about EVERYTHING and made a mental list of everything that’s wrong with me. Not the best thing to do before going to bed!

In a nutshell, that’s where I am at the moment. I’m an achey, tired and stressed mess!

I could ramble forever about my feelings, or I could keep it short and sweet. I know most people will prefer the latter!

As you’ve seen in my previous posts, I love pictures that help to explain things better than I can. The following quotes literally sum up my life at this exact moment. I’m spending far too much time on over thinking and negative thinking. Clearly anxiety and stress aren’t helpful with Lupus but I’d image a lot of us with chronic illness can relate to the following.

IMG_4007.JPG

IMG_4009.JPG

IMG_4008.JPG

It’s my big Rheumatology appointment tomorrow so I’m having an early night. I’ve not seen a Rheumatologist for almost 5 months so I’m eager to see what happens…

Til next time
X
http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 27

http://www.sickoflupus.co.uk

Hi!
Hope you’re all doing well.
I wish I had something bright and wonderful to say tonight but unfortunately no can do.
I’ve missed some medications lately and I can feel the repercussions of doing so. It’s scary how we rely so much on medications and a slight change can throw everything off.

I’m really looking forward to seeing my rheumatologist on Wednesday. In equal measure I’m anxious. I think I may be going ahead with new treatment as this time last year, I was advised to begin lowering my steroids.
For safety, I was told to drop 1 mg per month and remain at the new dose for a month then repeat. I only managed to drop 2mg but then had a massive relapse so didn’t continue on that plan.

I’m so desperate to live a life without steroids, I can’t describe how incredible that would be. You’ll completely understand this if you’ve been on steroids for a prolonged period. They’ve started to ravage my body and have permanently scarred the outside, but in an emergency, I know that little pill would save my life. Double edge sword personified.

In other news, my mask is definitely slipping.

IMG_3905.JPG
I’m losing the motivation to care as much as I used to. Before, I’d wear my makeup, throw on some earrings and try to look respectable. Lately, I’m a hot mess. I’ve stopped caring how I look atleast half the time. If I’m going to work, I’ll make a ton of effort and still think I look like crap but atleast I’ve tried.

I’m just too exhausted to care about the little things as I can barely do the essential things. Again, its gone 8pm and I’ve not attempted to make something for dinner. Yesterday, I fell asleep mid conversation during lunch with my mum. Today, I was pulling onto the driveway and literally had to put the handbrake on and rest for a few seconds before straightening the car.

IMG_3903.JPG
I’m putting myself on a little positivity challenge in November. Nothing grand, just something little and fun. I might take the November photo challenge. Not sure if I’ll instagram it but I think I might post to the Facebook group or Twitter. I’ll post the deets below if you wanna do it too. Tag sickoflupus so we can see how you’re getting on!

Ciao for now
X

http://www.sickoflupus.co.uk

IMG_3909.JPG

The Lupus Awareness Month Diaries: Day 26

http://www.sickoflupus.co.uk

Good evening,
How are ya?

It’s early evening and this Sunday seems to have gone on forever.
The clocks have changed so it seems later but I don’t think that’s the only reason. Also, I think I’m getting a cold….I bloody hope not! As you at know, it’s much harder to fight infections with Lupus.

I feel really down at the moment, I feel like I’m breaking, bit by bit. My efforts in even the slightest thing no longer seem good enough, my judgements are all wrong, I’m clumsy and my mind is in a permanent ‘fog’. Does anyone get like this? I feel redundant most mornings and by lunch, it’s already a write off! It sucks to feel this way.

I really don’t know how to get through these horrible phases. I need a fairy godmother with a magic wand. And potentially a trip to Disneyland!

When you doubt the likelihood of things getting better, you’re robbed of enjoying the now because you are literally waiting for things to get worse. Gosh I really really hate feeling so negative but it’s very hard at the moment.

I’m lucky to have an amazing incentive to keep going. I’m going to NYC mid November to celebrate my 30th birthday. I’m so grateful that I’ll have the distraction of New York to forget the negative connotations that come with this milestone. It’s no secret that I’m dreading turning 30, simply because I didn’t ever get to enjoy my twenties. I have such a strange relationship with time and the concept of time. I genuinely feel 19 but my body feels aged and fragile.

I think I’m going to spend the rest of my life a good 10 years behind everyone else. I’m far behind in this adulthood game and I’m slowly coming to terms with that. When I hit 30, have no idea how I’ll feel. Perhaps I’ll surprise myself and find a hidden strength and determination. I really hope so.

At the moment, it feels like I’m on the slow climb to the top of a roller coaster. I’m picking up anxiety all the time and I’m laden with emotional baggage, physical pain and tiredness. I just feel on the cusp on something significant. No idea if it’s a good thing or a bad thing but I feel really uneasy about what’s ahead of me.

This my friends, is what a decade of chronic illness can do you you.

Til next time,
X

http://www.sicloflupus.co.uk

The Lupus Awareness Month Diaries: Day 24

http://www.sickoflupus.co.uk

Good evening,
So everyday starts like this now:

IMG_3762.JPG
Because I’ve finished working for this month, most nights I’m not setting an alarm. Sometimes I’m woken by noisy neighbours, sometimes from pain but in all cases, I’m too tired to get up!
I’m really, really tired!

Aside from muscular pain and joint stiffness in the morning, I also get pins and needles and an all over crushing type pain. There’s something about waking in pain and feeling tired enough to go straight back to sleep, that puts you in bad mood.

I know it’s related to Lupus and Fibromyalgia but my body is so deconditioned that I always feel close to collapse for most of the day. In my past life, I’d walk for miles and love it. Walking was a big part of my routine, especially as I didn’t start driving until my mid 20s.

Today I left the house around lunchtime and felt ok, by 3 I was ready for a nap! I’ve not done too much today but I’ve seen family and friends and went to my favourite place for lunch.

It’s gone 8pm and I’ve still not made dinner. I just don’t have the motivation to do it! I live in an open plan flat and I could be in the kitchen in less than 5 seconds but the thought of cooking is actually making me tired!
I know I have to do it, along with putting laundry away but for now, it’s not going to happen. I know if I asked someone to come help me they would but it’s late and I don’t want to be a pest!

I’m really tired of feeling tired and really tired of feeling lazy! I sleep in because getting through the day requires so much energy. It’s a luxury to get the time to rest and it makes sense to take advantage when you can. But you can’t help feeling lazy when your day starts at 11am not 6am. I think depression encourages you to sleep more too. It’s not a case of lacking the motivation to get up and go, it’s the physical limitation to get up and go. Therefore, might as well stay in bed?

I don’t ever want to be perceived as lazy. I posted before how Fibromyalgia impacts sleep. Fibro prevents you reaching the deepest stage of sleep and so you never really have quality sleep, nor do you feel refreshed in the morning. It’s the height of frustration! Sometimes I really beat myself up but then remember that I’m doing the best I can. I’m doing everything I have to but with pain and chronic fatigue. Simply getting through the day should be enough. I should do a little victory dance before bed! That goes for everyone else battling this horrible illness.

I’m gonna sign off now. Still haven’t made it to the kitchen and I can’t see that laundry going away anytime soon. Maybe tomorrow…

X
http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 23

http://www.sickoflupus.co.uk

Good evening,
Thanks so much for the feedback on yesterday’s blog via the Facebook group. Clearly weight and body image is a subject that hits home with a lot of us. I loved being to highlight the subject.

Today I slept in because I was still up at 2.30am, mind racing. I got up at about 11.30 ish! (Is that bad?) I tell myself it’s ok because I live alone and it’s what days off are for!

Two nights ago I had what I’d call a bit of a breakdown. Something small triggered it but it escalated and before I knew it, I was inconsolable. I cried for about 2 hours. It was that face burning, jaw aching crying where you didn’t realise you were capable of crying so much. I transferred all of my emotion via a phone call to my mum and then felt so guilty afterwards. In short, I was feeling overwhelmed and really hopeless. I expected this to happen as I approach my 30th birthday but I genuinely felt heartache for the girl living this life. 30 is a big milestone and I’m sure my friends will be thinking about their future plans and aspirations. It’s something that I find hard to come to terms with. The gap only seems to widen between my life and theirs as I get older and it becomes glaringly obvious how far behind I am. In my head, I’m 19 and the last 10 years have been a surreal dream that I’m dying to wake up from.

IMG_3726.JPG

I’ve heard people talk about mourning their past life and identity and I do think that people with chronic illness go through this process, without even knowing it. Many of us have lost so much and may be clinging on the life we had pre-illness.

None really talks about this part. Our medical appointments focus on the now, pushing us forward but I feel like I constantly keep one foot firmly in the past. Problem is, I don’t know if that’s a good or a bad thing?

Yesterday and today I’ve made the effort to try to ignore the negative feelings I’ve been having lately. Ruminating just makes my anxiety worse. At the same time, it’s so important to release the suppressed pain and anger that builds up when you constantly say to people, ‘I’m fine’.

IMG_3724-0.PNG

Today’s been pretty low-key and I’ve only ventured out to the shops with mum. I fell in love with a handbag and though blatantly out of my price range, I told myself that because I couldn’t decide between navy, green or brown, I’d leave it. As usual, I avoided the clothes as I was in no mood to be disappointed. (See last nights post) Strictly shoes and accessories only! I had to give in quite early though from aching and fatigue.

I’ve been home pretty much all day, thought I should rest because I’m still getting chest pains. I feel like I want to rest as apposed to being forced to rest and so that’s lifted my mood a bit.
It’s early but I’m ready to call it a night. I’m gonna choose a film and watch in bed until I drift off. That’s the plan anyway!

Til tomorrow,
X

http://www.sickoflupus.co.uk

The Lupus Awareness Month Diaries: Day 22

http://www.sickoflupus.co.uk

Hello,
It’s nearing the end of lupus awareness month and I’ve thought long and hard about tonight’s topic but I’m gonna do it. Girls and boys, I wanna talk about Lupus and weight.

I was very lucky that my diagnosis came within months of severe symptoms. (The average time it takes for a person to be diagnosed is around 7 years)
One of the things I noticed when I was starting to get really ill is that I couldn’t tolerate food. I had zero appetite and couldn’t face food. I was in Thailand during this time and for over a fortnight, could only ‘eat’ ice lollies.
Needless to say, I lost weight.

Like most teenage girls, I thought I was fat (I wasn’t) and I had body image issues. However, when I lost weight pre-diagnosis, (age 18) I looked really bad.

Once diagnosed, the medication came. Over the last 10/11 years, the cocktail of medication has changed a lot, but one has been there since day one. ***PREDNISOLONE***

“Prednisolone is a corticosteroid. Prednisolone works by preventing or reducing inflammation. It is used to treat a number of conditions that are characterised by excessive inflammation.” (NHS Direct)

I knew that it was crucial that I took these medications even though the side effects were pretty brutal. Fast forward a couple months and I’m definitely a bit rounder and my face is fuller, I’m at uni and quite self conscious about it. (I now know the correct term is ‘Moon Face’. Yep) As time goes on, I gain more weight and I’m also starving all.day.long! So obviously, I eat!!! One of the main side effects of taking Pred is weight gain and increased appetite. It’s a vicious cycle because clearly an increased appetite is likely to contribute to weight gain but I genuinely felt like I was gaining weight at an abnormal rate. I swear I could just see and smell food and those calories would find their way to my waistline!

IMG_3632-0.JPG

My steroid journey has seen me at a size 8,10,12,14,16,18,20,22. I’ve taken between 2.5mg through to 100+mg daily and my weight has reflected that prescription. To shake things up I’ve lost a couple stone then gained 4 back and lots of other loss/gain equations too. Watching yourself change uncontrollably through pictures is heartbreaking. (Damn u Facebook) you start to hate mirrors and clothes shopping is torturous. I’ve cried too often to remember and refused to go out because I’ve had such a hard time accepting myself.

Anyone reading this who has never experienced this will find it hard to understand but imagine waking up tomorrow with 50-60lbs that shouldn’t be there that has no intention of leaving your body anytime soon.

I’ve had doctors tell me that I’m really overweight and need to lose weight, I’ve overheard the ultrasound staff talk about my size, and I’ve had a rheumatologist say I shouldn’t let it worry me. Friends and family are amazing and will always say I look fine, and honestly, when I look at my friends, I don’t see weight. I see the person and so maybe they’re telling me the truth?

I’ve been one of the lucky people with Lupus that doesn’t have the butterfly rash cross their nose and cheeks. This is a tell-tale sign of Lupus. In one of my earlier posts, I posted a picture from a Fibromyalgia site that depicted what pain could look like if visible.
My weight gain doesn’t look medical, I just look unhealthy. I also get horrendous anxiety, especially when I’m likely to see people from my past. I’m convinced they see me and think, Jesus, she’s let herself go!

Disclaimer: I flippin love curvy girls. I don’t think beauty has a size. I have no interest in being thin and I’d happily be a size 12,14,16…so long as I have CONTROL and it’s my CHOICE. I hate body shaming and I think there’s a place in this world for every size. If my fairy godmother offered me my version of the dream body, I’d choose the hourglass shape. However, I’ve never been able to master the confident plus size girl thing because I see my weight gain as a symptom of my disease. It’s hard to love my body when I look at how it got to this place.

IMG_3636-0.JPG

“People who take corticosteroids for a long period of time are prone to infections as their immune system can become weak. These infections may be much more severe than they usually would be and the symptoms that would usually be used to identify such infections can be hidden. For this reason people who take Prednisolone must be careful to avoid exposure to infections.” (NHS Direct)

It’s sucks that this little pill, though potentially life saving, doesn’t come with a cure, just a host of horrible extras.

IMG_3635.JPG

IMG_3643.JPG

I’ve been taking satans tic tacs, sorry, Pred for around 11 years now and the plan is to try Rituximab again as a way to come off Pred completely. It’s a long process to come off steroids but it’s the first thing a doctor will prescribe during a flare. It can literally take 3 years to wean yourself off and then go straight back to 60mg the day after if your body needs it!

In a dream world, I will come off Pred and be on an alternative therapy instead. As I get stronger, I can work on getting my body to a place that I’m happy with. Anyone on steroids will tell you that Pred thins the skin and with the weight gain you end up with scars. These are our battle scars but we have to do what we have to do to survive. Excess lbs and all!

Sorry tonight’s post was supersized! Hehe xx

http://www.sickoflupus.co.uk