All posts by sickoflupus

At Night.

At night, I’m not tired, even though I’m sleepy all day

At night, I spend hours just staring into space 

At night, I worry about tomorrow 

At night, I can’t get comfortable 

At night, I’m in agony 

Actually, at night I’m in insane, debilitating agony 

At night, I just lay there feeling lonely and afraid 

At night, when I fall asleep, I have frightening hallucinations 

At night, my sleep is always broken

At night, I wish I was somewhere else 

At night, I’m starving because I’m on steroids 

At night, my body seizes up and there’s nothing I can do about it 

At night, my mind won’t switch off

At night, I feel depressed

At night, I wish for a better tomorrow 

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Updates 

Hi,

It’s been absolutely ages since I’ve posted anything. Truth is, I’m struggling and I  don’t know what to do. 

Pain is everything right now. I’m in pain when I’m awake and I can’t sleep because I’m in pain. I get home from work and sit in my car for 20 minutes because I can’t bring myself to make that walk to my door – even though it’s around 20 paces. 

I’m currently taking over 30 tablets a day and feeling like I’m just feeding myself poison whilst I sit and suffer.

Right now I’m feeling pretty low, even though I’m on antidepressants. They really do help but sometimes your feelings override the happy pills. I mentioned before that I was taking Citalopram but I’m now on Mirtazapine. I just felt that I had plateaued with Citalopram.

So here’s a breakdown of my health issues as of now:

  • Lupus
  • Fibromyalgia 
  • Arthritis 
  • Anxiety and depression 
  • Sleep apnea 
  • Recurring chest pains 
  • Bursitis in both shoulders 
  • Intercranial hypertension
  • Nocturnal hallucinations 

I can blame that shopping list of illness on my lack of blogging. I really hate using this platform to post negative things but it’s been hard to find anything positive to write about. As of now, I’m kinda just sitting back and watching everyone live life whilst I’m struggling to walk around my house! I wake up in horrific pain and this sets the tone for the day. It’s horrible and such a sad existence. If I’m unable to have someone with me, I rarely get to do anything. And I’m talking the most mundane things, like grocery shopping.

I’m hoping to begin another round of psychotherapy because I can’t really cope on antidepressants alone. I’m trying to be realistic but also hoping for a miracle! I feel that if I can tackle my mental health, maybe things will improve? A holiday would also be nice!

Well that’s all for now,

I hope you are all doing well and I hope I can get back to writing more regularly!

XOXO

A New Kind of Fatigue 

http://www.sickoflupus.co.uk

Again, sorry for the huge gap in between posts but illness has completely taken over. I did however really want to write about fatigue. I’ve definitely spoken about fatigue before but recently, it’s been something I can barely cope with. 

To those who have never experienced fatigue, I imagine they think “oh it’s when you’re really tired” BUT it’s so much more than tiredness, lethargy and lack of energy. For me, it feels like an elephant is sat on top of me and I’m trying my best to get up but I can’t. It also has me in a permanent haze where I feel sleepy and my legs feel too weak to carry me. I’ve described it before as feeling like you’ve done a full day of work, you’re getting ready to go to bed and as soon as you get into bed, it’s time to get up and start a new day – with jet lag! It’s completely debilitating and I’ve had a consistent battle with fatigue for atleast 6 months. 

My history with fatigue has been that I wake tired and I’d struggle during the afternoon with tiredness which would remain until I went to sleep. Lately, I feel fatigued to the point of tears for atleast 80% of my day and I simply can’t function like I used to. I feel demotivated every day and overwhelmed by things that used to be easy. Below are a few examples of what’s been going on…

Showering: it’s a real task and I didn’t realise that this was normal until I found this image.. 

I get really breathless anyway with lupus and this combined with what should be a simple task is actually so hard. I always find myself resting my head against the wall tiles and closing my eyes for a few minutes because I can’t imagine how much energy it’s going to take for me to get myself out. 

Shopping: I try to have someone with me because this is one of the hardest things for me to do nowadays. Last week, after arriving at the shops, I sat in my car for 20 minutes before I could even contemplate getting out of my car. I parked a few feet away from the entrance but the exhaustion was horrific. 

Work: I’ve had to give in and ask for assistance at work. I just can’t do the hours I used to because the pain is too much and I don’t have the the energy. This is really hard to accept because I feel completely defeated. Once my shift is over, I’ll definitely need to sit for atleast 10 minutes before I attempt to drive home.

Walking: forget it, I just can’t. I’m always looking for a bench or chair. A 5 minute walk will always feel like a mile. 

Clothes shopping: nope. Online only thanks. 

Sleep: oh the irony of being to tired to sleep! 

It may be the sleep apnea, it may be the fibromyalgia but I never feel rested after sleep. On my days off, it’s completely normal for me to sleep through an alarm and finally wake up close to midday. I’ll then rest all day and never actually experience a feeling of alertness or energy. 

Overall, things are really, really crappy and life is so hard. Atleast with pain, you know that there’s a pill you can take to help. There’s no treatment for fatigue. I get tired hearing myself say that I’m “too tired” and I’m also tired of trying to not look lazy but when your body feels like it’s shutting down, sometimes you have to listen to your body and just go back to bed. 

Thanks so much for reading 

XOXO

“Struggling” is an Understatement 

http://www.sickoflupus.co.uk

Hi all, 

So it’s been ages since I’ve written anything but I’ve been really busy being really ill.

My entire world revolves around illness now. I officially see doctors more than I see friends and I spend more time awake at night than I ever have before. 

It’s not just lupus these days; its fibromyalgia, depression, anxiety, insomnia, nocturnal psychosis and sleep apnoea. The lupus brings fatigue, headaches, chest pains, breathlessness, arthritic pain, inflammation, muscular pain, dizziness, sickness and brain fog. Strange thing is, I don’t think I’m really taking all of this in. I know that if I really sit and think about everything, I will break down completely.

Today I had an ultrasound of both shoulders because for the last 3-4 months, I’ve been having horrific attacks of pain, especially at night, in my shoulder. When this happens, it’s completely debilitating. I cannot lift my arm higher than a few inches, I can’t pull the duvet up onto me, I can’t reach for anything. I was convinced that I ultrasound would reveal a tear in the tendon or some inflammation but the doctor couldn’t find anything. When he told me, I could feel the tears coming but I didn’t cry, I pushed those emotions back  down, said “thank you” and I left. 

It seems that a lot of my appointments conclude like this. I have an amazing team looking after me but I feel like I go and explain what’s happening, plead for help dealing with the pain but it’s reiterated that I’m on the maximum pain medication. There’s nothing left to be done.

How do you guys deal with these everlasting flare ups? I’ve continued to work but I am finding my job increasingly hard. It’s a huge blessing that I love my job because the passion for what I do is definitely keeping me going. 

When the Pain Gets To You

http://www.sickoflupus.co.uk

It’s been 23 days since I went into hospital with chest pains and breathlessness. I’m still really suffering with the symptoms and I feel unusually upset about it. 

I finally got out of bed at 12.30 pm today, simply because I couldn’t get up any earlier. Every part of me felt beaten and bruised and my body just felt too heavy to move. I lay there feeling teary and my day hadn’t even started. 

This has basically been my life for months. When you have chronic pain, you can go a long time without thinking about it. It just is. But then there are times like now when you feel like your  future has been completely decided without you. I honestly feel that this could be a permanent baseline for me and pain will be the most constant part of my life. I feel alone and so frightened and it’s a constant battle in my head as to wether I should be strong and continue to fight or completely rethink my lifestyle and aspirations. 


I think I’m struggling more so than usual because I’ve been to so many medical appointments recently and I’ve probably spent more time with doctors than my actual friends! My painkillers are stronger and I’m taking more of them. I’m also not sleeping and I don’t have much motivation to take care of myself. 

Pain and fatigue has taken over my life and it just seems like I’ll never be rid of this feeling. I can’t see the light at the end of the tunnel. 

I think it’s time to sit down with the therapist again. I see so many doctors about the physical aspects of my disease but I can see that my mental and emotional health may need some attention right now. 

Sorry for the downcast update but this is the reality of a chronic illness like lupus; sometimes the pain just gets to you. 

Thanks so much for reading 

Until next time

xoxo

Blue Badge Nightmares

http://www.sickoflupus.co.uk

Let’s get right into it! I think I’ve approached this topic before but I’m gonna talk about it again today.

Hands up if you have a blue badge? (Disabled Parking Permit)

Hands up if you deal with judgement everytime you use it?

Hands up if you don’t always use it because it’s easier to avoid confrontation? 

I can answer yes to all of these. I am 30, I look relatively well, (just a bit chubby) but I have Lupus and Fibromyalgia – and a blue badge. 

I got my diagnosis 13 years ago and I think I’ve had a blue badge for about 9 years.  Also, I wasn’t even the one who applied for it, my mum made the application as she watched my health decline. I was embarrassed and depressed in equal measure knowing that I’d need to start using a blue badge. This is what the typical badge looks like in England. You get a card that has your picture on the back, badge number and expiration date. You also get a clock to state the time of parking.  You aren’t automatically eligible for a badge either. You are thoroughly assessed by your local council and health professionals who will decide whether or not to award you a blue badge.

Who’d have thought this little badge could cause so much stress and upset for people who really need the help?  

(I should state the ‘aggressor’ I’m referring to, 99% of the time, isn’t a disabled driver. It’s a member of the public who feels they simply MUST intervene!)

The main problem is that I don’t look ‘sick’ and I’m certainly not in a wheelchair. Society still associates disability with not being able to walk. The other issue is that there is definitely a problem with able-bodied people using stolen or ‘borrowed’ badges for their own convenience. I hate being grouped in with these selfish people. 

So what does the badge mean to me?

– Less walking 

– Less exhaustion

– Less pain

And what do other people see?

– A lazy person 

– A healthy person 

– A capable person

– An arrogant, ignorant person who deserves to be reported.  There isn’t enough space on this blog to recall every incident I’ve had whilst using my blue badge. Unfortunately, when I’m stressed or experience adrenaline, I develop pain and pressure in my head and chest. Very often, I WON’T park in a disabled bay just to avoid confrontation with an angry stranger. To my detriment, I’ll leave the car further away, regardless of my pain or fatigue level because I just can’t deal with the stress. When my mobility is affected by a Lupus flare, it doesn’t just impact my legs and feet. It’s my chest and each footstep feels like my heart is ripping out of my chest. My legs and feet often feel like they’re being smashed with a metal pole or crushed in a vise. Most days I get the pain with the fatigue/dizziness and I can predict just how much time I have left before what little energy I have is spent. Still, I look absolutely fine. 

Without fail, I can expect to see people shaking their heads disapprovingly, pointing, people taking pictures on their phone of me and my licence plate, people demanding I show them my badge, swearing and people physically getting out of their cars to tell me just what they think of me. I’ve admitted before that if I hadn’t been diagnosed with Lupus, I might have been a head shaker or a pointer. Through my illness I’ve learned compassion and to avoid judging a book by it’s cover. Even now if I see a boy racer pull up into a disabled bay, I’ll give him the benefit of the doubt.   It’s a blessing and curse to have my illness be ‘invisible’. A blessing in my professional life, a curse when im forced to prove I have an illness that kills people every single day. 

I remember parking in a disabled bay when I went in for chemotherapy, I couldn’t be having a more aggressive treatment if I tried. Had I been in a wheelchair or better still, elderly, i wouldn’t have had a problem. 

And one more thing, parent and child spaces are often closer to entrances than disabled bays but none says a word! We accept that parent and child spaces are always closest to supermarket entrances for instance but none really questions why.

So how do you navigate through a blue badge drama? Many charities like Lupus UK have leaflets and factsheets that you can request. I keep the Lupus UK bookmarks in my car so I can simply hand it to them. Let the info do the talking. Try to keep calm and if you feel you have to defend yourself, try to keep what you say short and concise. 

“I’d love to park in a normal space but I have Lupus and I’m in a horrendous amount of pain.”

” Yes I look ‘fine’ but ask me again in 5 minutes.”

” If you have a problem with ‘people like me’ using a blue badge, it’s something you need to discuss with the council.”

However, also remember that you do not owe a stranger an explanation! Perhaps turn the situation around and say: 

“Congratulations, you DON’T have Lupus and aren’t forced to park here.”

I’m sure many of you will be able to relate to some of what I’ve written today. It’s sad that something that’s supposed to help us, comes with so many problems. 

Thankyou so much for reading. Feel free to share, it may help spread much needed awareness of all invisible illnesses! 

XOXO

http://www.sickoflupus.co.uk