Tag Archives: chronicpain

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 

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