Tag Archives: invisibleillness

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

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 

2016

http://www.sickoflupus.co.uk

Hi all,

I can’t remember the last time I put thumb to iPhone and blogged!
I have 2 main reasons for being slack:

1: I’ve been really unwell.

2: I’ve been struggling with depression again and I don’t like to post blogposts that are full of negativity.

However, this post will be more negative than positive, sorry.

For the last few months, I’ve been really busy and haven’t been living my ‘pacing and planning’ lifestyle.

I have been really terrible at writing this year. Thankyou for continuing to support my blog, I can see that a lot of you are still reading.

2016 has been the hardest year yet. I’ve lost count of the number of doctors appointments, hospital appointments, hospital stays and referrals. I should also take this time to acknowledge the amazing care I’ve had from the NHS. It’s easy for people to criticise the NHS, but I find that they are the ones who don’t spend too much time in hospital and so are unable to appreciate how much of a lifeline it is.

My 2016 NHS snapshot:

Thousands of pills, atleast 3 hospital stays, 3-5 trips to A&E, atleast 10 rheumatology appointments, around 10 GP visits, 3 appointments with a specialist nurse, chemotherapy, 2 steroid infusions, 1 ambulance called to my home, 2 brain scans, 4-6 X-rays, an attempted lumbar puncture, 2 trips to the brain centre, 2 trips to respiratory, the flu jab,2 visits to the sleep clinic, countless phone calls to the rheumatology helpline…

It’s no wonder that I’ve continued to struggle a lot this year with anxiety and depression. It’s impossible not to be affected by the disease itself and the mountain of other things that come with chronic illness. It’s the multiple appointments that you have to balance  with work, the waiting for test results, the constant fear of what might happen, worrying about meeting commitments when you’re in pain or when you’re just too tired. And all the while looking completely fine! (But that’s another blog post entirely)

It’s hard to enter a new year when people around you are setting exciting goals and resolutions and you’re just trying to survive the day. Lupus and fibromyalgia just don’t care about your plans or aspirations and for me, this is one of the hardest parts of the illness.

However, I’ve still made plans! Both personal and professional. I can’t let lupus win, it doesn’t deserve to! 

As I write this, I have so much pain in my chest, shoulder and arms so I’m gonna sign off here. (I currently have costochondritis) 

I’m planning to get back to weekly blogs and to share anything I feel may be useful to others in my position so check back soon!

Until next time X