If I Didn’t Have Lupus…

http://www.sickoflupus.co.uk

Now, this is a huge concept to fit into a short blogpost but recently, I’ve been going over and over this in my head.

To clarify, I’m not asking “why me?”, I never ask that. I’ve just reached a point where the contrast between my life and those close to me has never been more evident. 
 
This blogpost was inspired by a quote someone shared on Facebook. It was an emotional quote to see, although it’s something I think about a lot. There was something that made me stop and think, “This is really sad. But how could I have known?”

If you’ve been reading the blog for a while, you’ll have seen me write about letting go of a life I thought I’d have and how much I’ve struggled with this. I’ve also written about the positives that can come from a bad situation, those things that hopefully make you a better person. 

Although it hasn’t happened for a while, on the days where I’d be having one of my ’emotional episodes’, I’d ruminate about what could have been. I’d create a picture of the life that I honestly believed I would have if I didn’t have Lupus:

– I’d never have gained steroid weight and seen my entire body change.

– I’d be working in the industry I studied to be in and dreamt I’d be in.

– I wouldn’t need to rely on medication to stay alive.

– I’d be married/with the person I saw myself marrying.

– I’d have atleast one child.

– I’d have travelled, just like I intended to.

– I’d be 100% financially independent.

– I’d never have dealt with fatigue, anxiety or clinical depression.

– I’d be mirroring the life stages of my friends who are my age.

– I’d never have spent so much of my life crying.

– I’d never have lost my twenties to illness.

– I wouldn’t be ashamed of the multiple things I’m ashamed of.

– I’d be happy.

It used to tear me to pieces when I’d let my emotions get the best of me. I’d cry in that way where you can’t breathe and your face aches from crying. I’d blame Lupus for every failure and disappointment in my life because everything changed for me after my diagnosis.

I wanted to get this blogpost out before the end of the year because it’s inevitable that we’ll be looking to 2016 with hope and expectations. In the last few months, I’ve relied on medication to stabilise my mood and I’ve noticed that I’m able to cope in a way I haven’t before. Although not for everyone,  I credit the meds for helping me gain a better perspective and to better manage my issues. 

I’ve learned that one of the hardest things to think about is, “what if I didn’t have Lupus?” It’s a brutal question and there’s really no good that can come of it. I DO have Lupus. It’s real, it’s frightening and every single day is a challenge. All I can do is try to build a life that isn’t always a compromise and to enjoy the experiences that come my way.

2016 is one day away and I’m happy to be saying goodbye to this year. I’m not discounting the amazing, beautiful, hilarious and enriching moments that have happened but in some ways, it’s been one of the toughest years of my life.

I’m nervous for more hospital treatment in 2016 but it’s out of my hands. I’ve been set a tremendous goal of trying to reduce my steroids (doctors orders) alongside body reconditioning. 

To balance out the health stuff , I’ll be officially launching my business and working as a freelancer. I’m so excited to have something that is mine and mine alone; something that gives me instant gratification, purpose and control. 

It’s so sad that a life you thought you’d  have will never be – all because you got sick. But truthfully, the only option we have is to keep fighting and to create the (new) life we want, IN SPITE OF LUPUS.

  
Thankyou so much for reading. Wishing you all the best for the year ahead.

XOXO

http://www.sickoflupus.co.uk 

11 Things You Need To Know About Lupus

http://www.sickoflupus.co.uk

Hi all, 

Here’s a list with a difference. If you have Lupus, chances are you know all the signs, symptoms and statistics.

I was just sat thinking about the things you don’t see on the medical sites and in the medical books. What are those other things that also occur when you have Lupus? 

1. When people say that they “suffer with Lupus” – suffer isn’t just a verb.

Suffering can take many forms; in my experience, the suffering is physical and emotional. I ‘suffer’ with chest pains, joint pains, widespread body aches, sickness, dizziness, headaches, psychosis, fatigue, depression…

I ‘suffer’ emotionally knowing that I will most likely have this forever. 

2. You rarely just have Lupus and Lupus alone.

For me, its fibromyalgia and depression. For others, there are overlapping conditions like sjogren ’s syndrome, scleroderma, rheumatoid arthritis or Raynaud’s disease. 

3. People with Lupus can often be registered disabled.

When Lupus affects your mobility, you can apply for a Blue Badge. In the UK atleast, if you qualify for Blue Badge, you have the parking rights as any other person with a disability. Many people don’t know that the Blue Badge is for disability and long term sick – not just for wheelchair users.

4. Lupus can be scary as f**k

Pain can come on suddenly causing stress and panic. Lots of us regularly end up in hospital for all kinds of pain and again, a hospital atmosphere can be scary at the best of times.

Knowing that you lack control over your health may be one of the scariest things ever. It’s something I absolutely took for granted before my diagnosis. I often sit and think about how many medical professionals look after my health and I’ve put 100% of my trust in them. However, knowing that someone has your life in their hands is scary.


5. Don’t expect all medical professionals to know about your illness.

Don’t assume that the doctor you see in A&E will even know what a lupus is. I’ve experienced this atleast 3 times. Your GP may also lack knowledge about your condition. My nurse specialist explained to me that in most GP surgeries, there may only be 2 patients with Lupus out of several hundred. There are also hundreds of autoimmune related illnesses so bear that in mind also.


6. Living with Lupus means living with Lupus. 

I’m still finding my feet with this illness and I’ve been living with my diagnosis since 2004. Illness is a lifestyle (for me anyway) By that I mean I’m always balancing my illness with everything else going on in my life. I know that Lupus will always be a part of me and brings a range of barriers and restrictions. For example, I’ve accepted that pain is a way of life for me now, so is fatigue, so is depression, so is medication and so forth. 


7. The Lupus community is bigger than you think.

Being ill can be very lonely; even if you’re lucky enough to have a great support system of family and friends.

We created Sick of Lupus to unite Lupies all over the world. (The phrase Lupies was not created by us!)

Social media is an amazing tool allowing us to network and support eachother. I’ve seen so many profiles on Instagram, groups on Facebook and pages on Twitter that show how strong we are as community. We’re amazing at sharing information, advice and stories as well as forming friendships based on a very special common ground. 

8. Fatigue can be absolutely debilitating. 

I can’t verbalise just how severe fatigue can be. The word ‘tired’ just isn’t enough to describe how it feels to have fatigue. It’s like having flu, jet lag and being dosed up on sleeping pills at the same time. All day, everyday. 

9. Pain becomes a way of life

There’s no escaping it, pain will be a part of your life. It can take many forms but unfortunately, it will always be there. It’s important to get help in managing pain if you’re struggling. There are lots of resources available to you that you may not know about. I had 13 sessions of treatment at pain clinic as well as attending Lupus education programmes. 

You can also try alternative therapies, mediation and graded exercise. If you’re dealing with emotional pain, it’s equally important to seek help. (There’s a blog in the SOL archive about depression if you want to take a read)

10. Despite everything, Lupus can be totally invisible to others

This can be a blessing and a curse. The butterfly rash is arguably the most identifiable Lupus symptom but not everyone has this. I don’t think I’ve ever had any visible symptoms, even during my most severe flares. On one instance, whilst waiting for test results at hospital, the doctor said, “Do you mind waiting out in the reception area? You look fine to me” – 2 hours later, they told me I had pneumonia. 

11. All of the above can make you stronger.

When you consider all that you have to deal with, you can see how living with chronic illness can strengthen your character. Lupus is always with you and can be completely unpredictable. It can stop you in your tracks, ruin special plans, affect relationships, force you to settle, cause endless tears – but after all of this, you pick yourself and start again. 

I think illness forces you to see things from a clearer perspective – from a place of gratitude. You feel grateful for the days that you have little to no pain, for the days that you’re able to get out of bed.

I feel more empathetic towards other people and I feel more informed about invisible disabilities. If I wasn’t going through this, would I care about things like this? 

I’ve heard people say that what doesn’t kill you make you stronger; for now, I think this sums things up perfectly.

Thanks so much for reading. 

XOXO

http://www.sickoflupus.co.uk