Sorry for the delay 

Hi all,

I’m really sorry that I’ve not posted in a very long time but I’ve been incredibly unwell. You name it, I’ve had it. Viruses, hospital stays, medical tests blah blah. Lately I’ve had migraines every single day and the fatigue has been unbearable. 

3 weeks ago, I had a steroid infusion but unfortunately, I didn’t see much benefit. I’m still struggling with the fatigue (I.e. arriving at the supermarket and sitting for 10-20 mins before I can find the energy to leave the car) 

I’m hoping to start writing for you again very soon. In the meantime, if there’s anything specific you’d like me to write about, please leave a comment. 

XOXO

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World Lupus Day

http://www.sickoflupus.co.uk

Hi all,

May 10th 2016 is World Lupus Day. The perfect day to spread awareness! 

We all have our lupus stories and I’ve told mine many times. If you haven’t told yours, perhaps today is a good time to let those around you know a bit more about living with such a complex illness. 

I’m not expecting to see too much coverage about World Lupus Day because we have such a long way to go in getting the media to publicise Lupus. However, this year Lupus did get a boost with Selena Gomez admitting to her diagnosis. With 78+ Instagram followers, she did an amazing and very brave thing and I know a lot of us were grateful to see her someone use their influence for a good cause. 

I hope today is a pain-free day for us all.

XOXO

Night Terrors

http://www.sickoflupus.co.uk

Hi all,

So, I’ll try to keep this short, but do any of you have trouble at night? 

For the last few years I’ve been having hallucinations, night terrors, psychosis… I used to think that I was just really susceptible to nightmares, especially when the depression was bad. But it’s definitely more than just nightmares. 

I tend to have 3 or so specific hallucination scenarios that occur, I’d say 3-4 nights a week. If you’re squeamish, perhaps stop reading now. 
1: Bugs – I’ll see a mass of bugs that look like beetles, coming at me down the walls.

2: Spider type things – Similar to the bugs, they crawl toward my bed, up and down the walls. I’ll see webs and spiders all over.

3: Branches – This is the most vivid one as I feel like I hear things with it. Branches start coming toward me really quickly from the other side of the room as if it’s trying to trap me. 

And last week, I had an absolutely terrifying moment where I ‘heard’ a voice whisper Shhhhh behind my head. I was the only person in my room. 

They are incredibly vivid and incredibly realistic to the point that I’m jolted out of the hallucination through fear and panic and I’m terrified to fall asleep again. 

I don’t ever feel like I get into that true restorative sleep and this just makes my fatigue worse. I can be up between 2 and 6 times a night. Another strange thing is that lets say I get up 5 times in the night, each time I go back to sleep, I’ll have a super intense dream (most are recurring) each time I fall asleep. Once I’m awake, I can recall pretty much everything that happened in those dreams, how I felt, EVERYTHING! And that’s 5 individual dreams that I remember. When I get up in the morning, I feel like I’ve been on a roller coaster of emotions and I don’t feel rested. 

At this point, my doctors aren’t sure if it’s the Lupus, the Fibromyalgia or medication. One thing I will tell you is that it’s terrifying when it happens. I can’t tell you if I’m asleep, on the cusp of sleep, awake, I just don’t know what state I’m in when it happens.

I’ve had brain scans, brain tracing, I’ve had my eyes checked, spoken to a psychologist and we’re still none the wiser.

It’s a situation where I get frightened to sleep because the hallucinating is inevitable. Perhaps I need to go to a sleep clinic!

If anyone else has a similar experience, please feel free to comment below or on the SOL Facebook page!

Thankyou for reading, Incidentally, I’m going to bed now…

XOXO

http://www.sickoupus.co.uk

What It Means To Be Sick

http://www.sickoflupus.co.uk

Hello everyone, I’m back! 

I’m so sorry for leaving you so long, especially those of you who subscribe. I’ve been quite unwell and inbetween I’ve been working and trying to pace and plan. I’ve had a hospital stay, X-Ray’s, an MRI and a few minor health issues for good measure. 

Thanks so much for sticking with me. I’m back with a little blog to ease back into writing. This is a short blog about life with illness and how being sick differs from how you perhaps viewed illness pre – diagnosis. It’s really just a quick summary of my observations of late!

When I was little, being sick was very occasional and also very easy to deal with. When you’re a child, you understand that if you’re sick, you need to rest, to take medicine (if you’re lucky, the sugary strawberry kind) and your mum or dad would take extra special care of you. You also knew that it was temporary and in no time you’d be back to school. Most importantly, when you’re little, there really isn’t a fear that comes with illness. 

But once you get older, things change. 

Here’s how.

1. The medicine is nowhere near as yummy:

I can’t remember exactly what I took the medicine for but I remember that it was always an orange or a strawberry flavour that tasted a bit like liquorice and you could always feel the sugar grains on your teeth! 

I remember the very first time that I was given any medication for Lupus (though neither myself or the doctor knew I had Lupus!) I was given anti inflammatories for joint pain and then a few weeks later, steroids for pericarditis. 8 weeks later, they told me I had Lupus. 

Lupus is incurable but as soon as you’re diagnosed, the medications come hard and fast. The cocktail of medications will vary for each individual patient and it’s extremely likely that you’ll tally up an impressive number of pills and sometimes even intravenous medications.

Medications for Lupus can be pretty brutal, namely chemotherapy. It seems unbelievable that we’re treated with such toxic medications for an illness that can’t be cured. Is it worth it? 

2. You’re responsible for yourself:

Regardless of how much support we have, this illness is happening in your own body. The pain, the fatigue, the anxiety, the fear, everything connected to Lupus is happening to the person with the disease. You’re the person in charge of knowing everything about your medications; what they are, when to and how to take them. 

You have to create a life for yourself that almost revolves around being sick. Pain and sickness occurs whenever it wants to.  It doesn’t care if you work full time, if you’ve planned a holiday, if you’re a parent, wife, whatever. This unwanted diagnosis is constant a saboteur but we and we alone are responsible for the daily fight.

Sometimes the fight gets too hard and all you want is to give up. However, there will always be a reason to keep fighting. For me, I have the responsibility to be strong and brave and to be there for my friends, family and my special little goddaughter who only sees me as Shari, she has absolutely no idea that I’m sick. I fight for them.

3. Explaining sickness is complicated:

Rarely do I tell the truth when someone asks how I’m feeling. It’s just a bit too complicated to say, “I woke up this morning with pain in my legs and was too tired to make it into the lounge. Chest pains began at lunch time and my meds are making me nauseous, I also can’t shift this headache and I’m a bit breathless….”

Another thing that’s hard to explain is the concept of never really getting ‘better’. The perfect example is taking a sick day/week/month from work and upon your return, people thinking that you are better. It’s so hard to explain that with lupus, you never get to 10 on the scale of wellness. 

4. Describing pain and sickness varies. A lot:

Stabbing, crushing, sharp, dull, heavy, tearing, sore, arthritic, bruised, piercing,  achey. Also; nauseaous, irritated, swollen, excruciating, dizzy, tender and the old classic, “I think I’m going to be sick”

5. Your diagnosis can impact things you haven’t even thought of:

Where do I start? Travel insurance, applying for a loan, mortgages, life insurance… companies in particular seem to have a problem accepting people with chronic illness. Even the insurers that claim to specialise in helping ill and disabled people draw the line when met with specific conditions. Premiums skyrocket as someone sat behind a desk decides that you are too much of a risk to be insured. 

6. Illness can change you for the better:

I’ve said in previous posts that although chronic illness is devastating, we’re given a really unique perspective on the world. We are able to appreciate the things that healthy people take for granted. A moment without pain is a moment that we are grateful for and  a day without symptoms is like a holiday! 

We don’t sweat the small stuff, in fact, we’d happily trade the stress of planning a party or finding the perfect outfit over our health issues any day. 


 XOXO

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

Sorry For The Delay

http://www.sickoflupus.co.uk

Hi everyone,

How are you?

Thank you for checking back on the blog, I check the stats regularly and the SOL blog is still being read worldwide! In the last week I’ve seen views from Ireland, USA, Mexico, Indonesia, Australia…

It means so much that you care to read my ramblings. I had planned to blog regularly throughout October to coincide with Lupus Awareness Month here in the UK. However, if you read my previous post, you’ll have seen that I’ve been dealing with a horrible Lupus flare.

I’m only just coming out of a huge setback caused by Pleurisy and chest infections. I probably should have blogged about it but I was just too unwell.

I hope to be back soon with regular posts and i’m thinking of vlogging and creating a SOL Youtube channel. Maybe. Let us know if you’d be interested in watching SOL on YouTube! Tweet us or comment on our Facebook page.

I sincerely hope that you are doing as well as can be.

Speak soon XOXO

http://www.sickoflupus.co.uk