#LupusProblems

http://www.sickoflupus.co.uk

Hi All, Welcome back!

I wanted to write today because by all accounts, today was a ‘good day’ ~ that was until about 6:30pm. 

I was able to leave the house today, socialise briefly and enjoy the sunshine but by mid evening, I had a sudden, intense onset of pain. 

I’m all too used to the “I’m-ok-oh-wait- I’m-not” merry go round and how do I explain this to people? Simply put; Lupus Problems.

We all have our own set of Lupus Problems and so I thought i’d take a lighthearted look at the truth: 

For example, you’re tired all day. You finally get into bed and boom! Wide awake. This my friend is a classic Lupus Problem. 

Here are a few of my top Lupus grievances: 

1) You have to take multiple medications. Only one of those is actually licenced for Lupus. 

2) You have to take your medication but at a certain time of day, with food, 3 times a day and then extra medication to protect your stomach against the impact of taking so much medication. Phew! 

3) You definitely deserve a holiday. None will insure you. 

4) Speaking of the sun, the doctor tells you to avoid the sun. You can’t go on a winter break either because you have Raynauds! 

5) The very drug that keeps you alive also makes you fat and eternally hungry! Oh the struggle…

6) The phrase, “But you don’t look sick”

7) You only see your Rheumatologist every 8-10 weeks. In that time you’ve racked up a list of 27 problems that you need to discuss. But the appointment is only 20 minutes long and so you only get to discuss 2 things. 

8) The GP contradicts the Rheumatologist.

9) You’re invited to something in 3 months time. You’re available and really want to go but it’s always a 50/50 chance that you’ll be well enough. 

10) You have to listen to your body instead of your heart or your head. 

11) You can never verbalise just how tired you feel. 

12) Meeting medical professionals who have never heard of Lupus.

13) Suddenly becoming sensitive or intolerant to things that were previously fine. 

14) The excruciating pain. 

15) You rarely just have Lupus. You have Lupus AND Fibromyalgia, Cushing’s disease, Sj√∂gren’s syndrome, Raynauds etc etc

16) Brain fog.

17) Sleeping too much or not sleeping at all. 

18) Feeling guilty. 

19) Someone hugs you ~ it hurts. 

20) Not knowing if your depression is Lupus related or merely a consequence of living with chronic illness. 

21) The judgement when you use a disabled parking bay ~ even when you have a valid badge/permit. 

22) Waiting for medication to kick in!

These are just some of my Lupus Problems but I would love to hear yours. Head to the Facebook group Sick Of Lupus to share your views!

Thanks so much for reading 

XOXO

http://www.sickoflupus.co.uk

How Often Do You Cry?

http://www.sickoflupus.co.uk

Hey you,

So this is a really short post because if I go into too much depth, it will quickly spiral into a dissertation about depression!

My question to you is, How often do you cry? 

Today I woke up with my body feeling like it was being squeezed Inbetween a vise. I couldn’t motivate myself to get out of bed because the effort it would take to get my body out of bed was too much. The pain level also set the tone for the day ahead and so already I felt defeated. I could have cried. But I didn’t. I felt sad and frustrated but with moments like these, I rarely cry. 

Now the quote in the picture might seem a tad dramatic, but crying is how people have always expressed feelings. It’s how we communicate pain wether physical or emotional. It’s considered a way to ‘let it out’ so that we can move on from an incident of pain or distress. 

But what if a good cry doesn’t change a thing? What if after all the tears, you still feel a sense of hopelessness? I’d say this is where I am right now. I’ve been crying for a third of my life. About the same thing. (And contributing massively towards the sales of waterproof mascara!)

YES. 

I’ve definitely just cried because I am me. I ALWAYS acknowledge the fact that someone somewhere has life 100% harder and with more problems that you can possibly imagine. However, when you’re in the midst of a depression, it’s hard to see past your problems. 

My physical pain levels go up and down but actually, I don’t often cry in response to pain. I’ll verbally express how much I’m hurting but that’s about it. The last time I cried during a flare up of pain was on valentines day. Tendinitis and chest pain had been brewing all day and by the evening, I was practically completely immobile. I was alone and unable to even lift my arms. I cried due to the excruciating pain and the frustration over not being able to even push pain pills out of a blister packet. I also cried shortly after my first chemotherapy session because I was completely overwhelmed.

There are other things that warrant feelings of sadness. If like me you have problems with anxiety, you’re often on the cusp of tears. Normal situations can become really stressful and emotional. As for someone pointing out the things you’re doing badly/wrong, forget about it, pass the tissues. 

I’m proud to be an emotional and compassionate person and can cry at a cartoon if it’s sad enough! (If you didn’t cry at the film ‘Up’, we can’t be friends) but these tears are so different to the ones that fall because I’m ill. The last time I really broke down was because I felt so trapped and overwhelmed by my health situation. I dealt with it by bringing my bedding onto the sofa and going to sleep.

Although tears don’t always change things, it’s my go-to when things get tough. I cry for other ‘Lupie’ fighters when I see their posts on Facebook. I cry when I hear that Lupus has taken yet another life. I cry for the things Lupus has taken away from me and also the things I fear I’ll lose in the future. But mostly, I cry because try as I might, the illness is bigger than me and is always the one in charge.

 (Enter crying emoticon here: ūüė•)

Thank you for reading, hopefully I didn’t bore you to tears…

XOXO

http://www.sickoflupus.wordpress.co.uk

Are You Feeling Better?

http://www.sickoflupus.co.uk

Hello!

I’ve been wanting to write about this for a while and today I’m finally getting round to it. In short, What happens when you’re technically not in a flare but you still feel unwell? How does this grey area affect your quality of life? 

People with chronic illness should find this all too familiar and people without may find it answers a few questions about their loved one. 

Medical literature tells us that Lupus is either active or in remission. I personally hate this explanation because it’s not that simple. It’s also dangerous to use the term ‘remission’, especially to a newly diagnosed patient because it implies that Lupus goes away. However, when a blood test shows that everything is ‘normal’, why are we more often than not still feeling awful, still feeling pain and still fatigued?

It’s nearing the 11 year anniversary of my diagnosis and hand on heart, I think I can count on one hand the number of days I’ve been 100% pain- free. 

Of those days, I’ve had pain ranging from mild, to oh-my-goodness-I-think-I’m-gonna-die. The ambulance has been called many times, I’ve had lots of hospitals stays and countless hours at A&E. When things get to this point, it’s pretty much established that you’re experiencing a flare. 

But how do you handle your illness when doctors say the Lupus isn’t active but you still have a full list of symptoms? And do you identify yourself as a sick person? Or someone that is sometimes sick?  

When you consider that each medication carries side effects, that fatigue cannot be treated and that sometimes what’s happening in the mind manifests itself physically, Lupus is a miserable bastard that is ALWAYS present. 

To be a functioning member of society, there are certain things that you have to do. There are the fundamentals like to work and go to school. Then there are the pressures to fulfil your role as a parent /sibling/friend. Then we have to find the time to be social, to exercise, to care about your appearance, to be fun, ambitious and interesting human beings. Basically, to keep up with the (healthy) Jones’s. The pressure we feel and the pressure we put on ourselves makes it hard to choose rest over the 25 things on our to-do list. Sick or healthy, these demands have to be met.

For most people, you are either well or unwell. You either have the flu or you don’t. You either have a chest infection or you don’t. You either have a sprained wrist or you don’t. When most people are ill, they take time to rest and recuperate and eventually the illness leaves and you get back on with your life. Chronic illness is defined as persistent and long lasting. Lupus is both chronic and incurable. How do you manage a life where illness will never leave? 

In my case, I always feel ‘ill’. At some point in every day, I have to factor in a time to rest or sit down to give my body a break. This doesn’t fix the problem, it’s just how I choose to pace myself. When I know that I’m not ‘flaring’, I can still have pain, nausea and fatigue for example, but I can tell the difference between this annoyance and a flare. It’s a routine I’ve gotten used to and it sucks. 

It’s hard to wake up everyday and know that you’re going to have to hide exactly how your feeling, plus none really wants to hear about it, let’s be honest. It’s also easier to keep quiet and carry on for more serious reasons. (such as wanting to protect your job.)

Most people are nice and will always ask, “Are you feeling better now?”, A question that is both very sweet and at the same time able to break your heart. I’d like to be able to say, “No, you’re never better with Lupus but I’m back at work because I have to. I’m just dosed up on more steroids and painkillers – but Thankyou for asking.” (P.S, I’d never say that! I’m too polite, everyone would feel awkward and they’d probably never speak to you again!!)

It’s so hard not to lose yourself to your illness. I was crying to my mum yesterday about a plethora of things that were getting me down and I said that I felt like the girl I was doesn’t exist anymore, I can’t remember her and I feel like she died a long time ago.  She was so different to who I am now. I slowly stopped living her life and all I’ve known for the last 10-11 years is myself as a sick person. I’m sick all the time, it’s just that some days are better and some days worse. It’s not something you get used to, you just have no choice but to carry on. 

We all handle our illness differently but I’m finding that the trick is to steal special little moments that take you out of your illness bubble,(Art/music/relationship/travel…) It’s these things that will ultimately help improve our quality of life and help to redefine the person ‘created’ by Lupus. 

Here’s hoping that one day we can honestly answer, “Yes, I’m feeling great thanks”.

Thankyou for reading XOXO

http://www.sickoflupus.co.uk