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

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

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 

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