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

When Pain Is All You Have

http://www.sickoflupus.co.uk

Hi everyone, 

A while back I posted a blog called ‘On the Cusp’ ~ I felt like either something really great or something really bad was just around the corner. Turns out, it was the latter. 

For the past month, I’ve been battling chest pains/pleurisy/chest infections which parlayed into horrendous fatigue, breathlessness and general lupus overload. 

Tonight I’m writing at 2.15 am because I can’t sleep and I’ve just cried for about 15 minutes. Tonight must be the 28th night in a row that I’ve not been able to lay down due to the inflammation in my chest. It’s late and there’s none I can call because everyone is asleep and they have to work in the morning. They wouldn’t be able to help me anyway but it really hit me just now that I’m alone. I feel so sad and frustrated but also really frightened because it seems I’m only getting worse. 

(Just to clarify, I have the best friends and family anyone could ask for. It’s just that I hate calling late at night)

Pleurisy is inflammation of the sheet-like layers that cover the lungs (the pleura).The most common symptom of pleurisy is a sharp chest pain when breathing deeply. Sometimes the pain is also felt in the shoulder.(www.nhs.uk)

I first had pleurisy before my diagnosis in 2004 and maybe 8-10 times since. This time however, I’ve not coped well and I’ve been pretty much confined to my house. I’ve seen my doctor, been to the emergency room and had the ambulance round all in the last 3 weeks. My daily intake of pills has tripled and I’m so frustrated with it all. In spite of the pain, the breathlessness and my inability to do much for myself, the doctors tell me that my scans, tests and X-rays are all ‘fine’. I should take more painkillers and ‘see how I get on’.

The pain is simply unbearable. When I attempt to lay down, my breathing becomes restricted yet rapid and shallow at the same time. The chest pain is stabbing and it radiates up into my shoulder. I wouldn’t wish this on my enemy. Pleurisy can occur without lupus but   with lupus, it takes far longer to recover. 

I’m just so angry that I keep getting these massive setbacks like plurisy and pericarditis. It takes such a long time to recover and inbetween, I still have to live life/go to work/fulfil obligations. 

Right now, it literally feels like pain is all I have. I feel like two people because I can’t let pain beat me. There’s the professional me where I’m doing all I can to appear normal and together and do a job I know I’m damn good at. Then there’s the sick me, the real me and the person I can be whenever I’m not in front of other people.

Having lupus and fibromyalgia makes things more complicated because I just can’t identify what’s causing the pain. I just know that it’s chronic and this means that it will always be part of me. What do you do with that? Am I supposed to accept it or am I allowed to be really, really angry, bitter and negative?

I’m physically drained and I don’t get much sleep. My psychosis is so bad at the moment. The episodes are much more frequent and so upsetting. There’s literally no escape from pain and upset at the moment. 

Pain is something I’ve posted about before but recently, pain is the most constant and predictable part of my life. It’s there ALWAYS. it’s something I feel at some point everyday but over the last few weeks, it’s ruled my life. Tonight I just had enough. 

Thankyou for reading xxx

http://www.sickoflupus.co.uk

Crazy Thought…

http://www.sickoflupus.co.uk

This is a short one, I just wanted to share a crazy idea I had.

Just imagine there was a Lupus simulator experience that people could try. It would be an insight into  the most challenging pars of chronic illness and a way to help explain how illness impacts your life! Anyone up for the experiment would do it for a whole week. 

It would be a controlled experiment where people would get to actually feel fatigue, feel pain (both minor and excessive), feel emotional pain, feel stress, feel awful whilst looking healthy on the outside and take medications (placebo ofcourse!)

Perhaps they’d also wear weighted clothes to see how steroid weight gain feels. Perhaps they’d try to book simple things like travel insurance after disclosing their illness. 

What about work? In this imaginary scenario, the person would wake up still felling tired, they’d ache, they’d still feel incredibly fatigued, would most likely feel sick or nauseous BUT they’d still have to go to work. 

At work, they’d use all their energy trying to appear ‘fine’ or ‘normal’ and after work, they’d most likely crash and feel too awful too cook or do much around the house. The next day would be exactly the same. 

I wonder how many people would be up for a challenge like this? Would friends and family try it? 

Maybe one day something like this would exist! And not just for lupus but for other chronic illnesses too. I’d like to think that if my loved one had a chronic illnesses and I could see how it actually feels, I’d want a better insight. 

A good idea? Comment below on tweet sickoflupus. 

XOXO

http://www.sickoflupus.co.uk

60 Second Post

http://www.sickoflupus.co.uk

Just wanted to remind you that it’s flu jab season! 

However, It’s really important that you double check with your personal doctor as some medications can leave you contraindicated. 

If you live in England, doctors surgeries are currently promoting the flu jab for those most susceptible – and their carers. 

As you may know, if you have Lupus, the flu can leave you extremely unwell and unlike ‘healthy’ people, it can take weeks to recover. 

I had my free flu jab today. It takes less than 10 seconds and shouldn’t hurt. HOWEVER, I’m currently in a ton of discomfort and I feel massively unwell. The same thing happened last year with my flu jab so just bear that in mind. 

That’s all folks! 

http://www.sickoflupus.co.uk

Sharing

http://www.sickoflupus.co.uk

Hello!

This will be a very short note as I’m recovering from Pleurisy. I had breathing problems and horrendous chest pain early this week and went to the emergency room. They’ve given me medication and advised lots of rest. 

I just wanted to talk about how Lupus gets lost amongst other, bigger causes and charities. (And it’s not just Lupus, there are so many other causes that we just don’t hear about.)

I heard something recently that I can’t stop thinking about. When I went to hospital this week, my doctor commented that Lupus doesn’t get the real attention it deserves. In his opinion, “Lupus isn’t one of those trendy diseases.” He compared the publicity to that of cancer and spoke of how autoimmune illnesses will never be able to compete. 

It’s always so disappointing when I’ve seen the destruction that Lupus can cause yet I also see it go unnoticed in the public eye. Illness isn’t a competition and there are many conditions that I myself have never even heard of, but year after year, October rolls by and if you’re lucky, there might be a short article in the press. 

In the UK, it’s currently Breast Cancer Awareness Month. An incredibly important cause. The amount of publicity that it will receive is astounding. Some of the worlds largest companies will be supporting the cause. The fashion and beauty world will sell special edition, pink items with proceeds going to charity and TV personalities will wear a pink ribbon. Tomorrow, I’ll be wearing pink to work as my company are also supporting the campaign.

I just wish that one day, I would hear someone say; “You know that incurable illness that devastates the lives of millions worldwide and can be completely debilitating, the one that causes pain, rashes, inflammation of any part of the body, fatigue, miscarriage, hair loss, depression, organ failure and can also kill? Well, we’re going to support that cause on a really big scale.”

Until then, we will have to make do with sharing the stage with the big dogs and wait our turn. 

Thanks so much for reading. 

I’ll finish with a thought from Dr Gregory House.  He understands!

 
http://www.sickoflupus.co.uk