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

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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.

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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.

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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.

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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

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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