Just Wanted to Say…

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Hi everyone,
I thought about wether I should write about this topic because once I do, my cover is blown. And perhaps yours too?

But I’m gonna do it because I think it’s important.

I wanted to talk about hiding things about your illness, for many reasons.
This week, I played the part of a person that was ‘ok’ and I almost ended up in hospital for it.
In short, I caught a virus just over a month ago and had no idea how much I’d be hurting, weeks after.

When I went to America for my birthday, the sheer awesomeness of being there distracted me from illness. In spite of it being below zero most days, I didn’t complain about the weather, I was just so excited to be away. I think adrenalin carried me through.

Up until last week, I was still feeling happy and optimistic about life but then I had a massive episode of pain and sickness. It was a sudden attack of chest pain that I initially thought was pericarditis, again. It happened 3 days before I was due to work two full days back to back. I planned to get as much rest as possible and to take painkillers.
However, the pain developed into an epic crushing pain on my chest and shoulders and a completely different pain than normal. Still, I didn’t call a doctor.

I got up for work and and should have called in sick but it’s the weekend before Christmas and I know it would reflect really badly if I did. I had a sleepless night because I couldn’t lay flat or lean to the left or right. If I tried, I became breathless and the chest pain would become unbearable. Anyway, I did a full day and obviously I suffered.

The next morning, I woke in much more pain. I barely slept and had so much muscle weakness and fatigue. Still, I got ready and went to work. I was so upset with myself that I didn’t have the courage to call my boss and say, ‘I simply can’t come to work today, I’m in agony.’

Throughout my shift I could feel myself wilting and I just felt so pathetic. I worked bloody hard and exceeded my targets but I just wanted to cry.

When I got home, I literally parked my car and then threw up in the car park. It was like my body was doing it’s best to stay professional until I was completely alone and I could be completely honest.

Fast forward to today. At about 3am this morning I was in so much pain that I called rheumatology to leave a message on the advice line. Again, I didn’t sleep more than an hour and I felt like a very, very sick person and actually really frightened.

This evening, I finally saw a doctor who explained to me that because steroids can ‘mask’ infections, it took longer for me to realise the degree of a viral infection I’d developed weeks earlier. Because I chose to hide the extent of my symptoms, I put my body at risk and now it’ll take longer to recover from a bout of ‘pneumonia type illness’. I’m taking antibiotics but I could have benefitted by seeing a doctor much earlier.

The moral of this story is that your health should always come first. You can hide the extent of your problems to keep up appearances but never at the expense of your health. I am definitely still learning to say no but I’m still really bad at it. I chose to go to work instead of A&E, all so that I didn’t disappoint anyone. I’ve done this many times and it’s so irresponsible.
(Disclaimer: I work for lovely people and have great colleagues but staff absence reflects badly in any company. People will often remember the things you did wrong more than the things you did right.)

If you’re like me and worry too much about what other people think, its a trait that’s hard to change. However, the world will not stop if you have to call in sick once and a while!
You can push through the pain/depression/fatigue to prove something to your boss, but it’s unlikely your boss will be with you at home, cooking your meals and drying your tears at 3am. Something to consider.

Thankyou so much for reading. I hope this helps in some small way 🙂

Til next time X

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One More Thing…

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Me again!

I literally just pressed publish on the previous blog and I thought I’d follow up with a list of New Year’s Commandments for us Lupies. Not resolutions, (remember, I’m not making those this year) These are Commandments. The things we should always do for happier, healthier lives:

*Purely for fun, I didn’t get into Rheumatology school!*

Ahem…

– Thou shalt take all medications on time.
– Thou shalt stop feeling guiltily for being ill.
– Thou shalt rest whenever possible.
– Thou shalt ask questions at medical appointments.
– Thou shalt try to spread awareness.
– Thou shalt not say mean things about our bodies. Blame the medication, not yourself.
– Thou shalt use your Blue Badge if necessary, ignore the horrible people.
– Thou shalt research treatments and medications.
– Thou shalt ask for a second opinion if necessary.
– Thou shalt explore the benefit of
relaxation/meditation.
– Thou shalt accept help.
– Thou shalt avoid stressful situations.
– Thou shalt laugh often.
– Thou shalt own an abundance of jersey wear.
– Thou shalt know thy worth.

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With Love,
X

http://www.sickoflupus.co.uk

New Year, Same Problems

http://www.sickoflupus.co.uk

Hi everyone, welcome back!

So, it’s that time of year again. Holidays are comin’ and so is a brand new year.
It’s a marketers dream; what better time to convince us that we need to make big changes in our lives? It’s an attractive proposal and If we buy into it, we’ll be granted with the life we’ve always wanted…

You’ll see the gym’s pipe up with new membership offers, Weight Watchers will increase the frequency of their TV ads and don’t forget those New Year’s resolutions.

Sorry to sound cynical, but I wanted to talk about how the media/social pressure forces us to refocus once more and invest in self improvement. The clock is ticking and so we MUST start chasing those all important dreams! (Even though we did the same thing last December.)

There’s an abundance of affirmations and self-belief messages around that we can’t help but have an emotional response to. Messages like this:

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I can only speak for myself but I struggle daily with wanting more for my life and not being able to because I live within the limitations of my disease. Yes, I’d love to exercise, drop some weight, take on more at work, grow my own business, travel more, be spontaneous but I simply can’t. My mind is constantly fighting with my body and my body always wins.
I hate that my dreams are placed on hold because “It all depends on how I’ll be feeling.” This relates to every aspect of life from the mundane to the big issues we all face.

I find it hard to sit and listen to people talk about their resolutions for the coming year because it feels like a game I’m not part of. I keep a mental list of all the things I feel I should be doing and with every day that passes, it seems more and more impossible. The pressure of New Year’s only fuels my anxiety and it seems like the entire world is moving forward with their future.

I won’t be making New Year’s resolutions because I don’t need the added pressure! I’m not planning much beyond seeing how I feel after I start the Rituximab treatment. The best case scenario is that the Rituximab is a success and I can slowly start to rebuild my life and get off those damn steroids!!

I hope I’ve not been too much of a misery for you all but I promised these blogs would be completely honest.

I’ll end on a positive note with a nice, uplifting quote. I love the sentiment and it’s a great piece of advice for those of us always trying to play catch up!

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Thanks so much for reading,
Til next time X

http://www.sickoflupus.co.uk

This is 30!

http://www.sickoflupus.co.uk

Hello,
How are ya?

I wanted to blog today because I’m back from my holiday and it was an interesting experience.

Months ago when the holiday was booked, we requested something called ‘special assistance’. My nurse recommended it on the basis that she didn’t want me to be exhausted and uncomfortable before even leaving the country!

*Top Tip: If like me you suffer with muscle pain and weakness, you can ask your travel agent to request a wheelchair/walking aid to take you from check in to departure gate. It’s free and if on the day of travel, you feel you don’t need the assistance, simply say no thankyou.

I was travelling with my mum and she insisted that I use the assistance. I was recovering from flu and had chest pain so I agreed to use the wheelchair. It wasn’t my first time in a wheelchair but this time I felt really uncomfortable and like I was a bit of an inconvenience. I think I just had this image of me strutting through the airport like a confident traveller. It was quite the opposite.

Before we even left the country, my mum upgraded our seats for the extra width and legroom. What a relief! That little extra space made all the difference to the flight. Again, it’s worth researching these options if you’re going away.

8.5 hours later and we were in New York! People talk about the ‘energy’ of New York City and it’s true. The moment I saw the cityscape from the Brooklyn Bridge, the fatigue and the lethargy just wasn’t an issue. In spite of being awake almost 24 hours, I wanted to play!!!

The first time I visited New York, I was 15 and without a single health complaint. No Lupus diagnosis, no fatigue, no pain.
This time, I had all my health baggage along for the ride and I knew it would be a very different trip.

But something amazing happened.
(I’ll brush over the fact that I developed a severe chest cold, developed laryngitis and couldn’t speak for the last 4 days of the holiday!)
For the first time in years, I felt really alive! Now, to a healthy person, this will sound like a massive overstatement, but for a person that spends most of their life confined to the home, you rarely feel like you are ‘living’.

The second I stepped onto Times Square, it took me right back to being a teenager and I felt like I was part of something really special. I didn’t feel tired, I didn’t even feel that cold in spite of New York being uncharacteristically cold.

As the days passed, the pattern was the same. I got up early and actually wanted to start my day. I actually wanted to make an effort with the way I looked, I actually wanted to maintain a feeling of mindfulness and positivity.

I can honestly say that I was happy everyday. I’m not seeing a therapist anymore and so my struggles with depression are on my shoulders.
The smallest things made me smile and I felt really lucky to be there.

The reason that we chose to go in November was so that I could minimise the trauma of leaving my twenties. Not meaning to exaggerate again but receiving a diagnosis on the cusp on turning 20, I’ve not had a break from illness in over 10 years.
I’d created a huge scenario in my head of how the night before my birthday would play out, I was convinced that I would have an emotional breakdown. In actuality, we went to an Italian restaurant for dinner where I had the best pizza I’d ever had! We then went into a couple of stores (the stores stay open until 2am!) and then the clock struck midnight as we watched TV in our hotel room. A pretty lovely way to see in a new year.

I won’t lie and say I didn’t have pain and fatigue, but my mind was in such a great place that I truly believe it’s what’s got me through. I even said to mum that I don’t feel like I have Lupus.
It was awesome to be able to say that.

Being away took me out of my negativity bubble and allowed me to see my a life for myself that I really want. It helped me remember that there is a big, beautiful world away from the bed, couch, hospital, prescriptions, disability, pain, stress…
For once, I felt a sense of calm and clarity and I’m so grateful that I’m entering the next chapter of my life with a healthier outlook.

http://www.sickoflupus.co.uk

Thankyou for reading
Til next time!
X

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