Lupus and being abroad: diary entry 4.

This post is going to be a mixture of how I’ve been the last few days. Like I said in a previous post, I’ve had fairly equal days in terms of being good and bad. However, I have noticed in the recent few days my days have almost been split, I’m fairly good in the morning and I quickly decline by afternoon. The temperature is rising as the days go on and the breeze is slowly withering away to nothing. There usually is a breeze in the morning hours but it seems as it gets to 1pm it suddenly stops, and returns at late afternoon/sunset. This means by afternoon I’m typically under the parasol or cooling off in the water. 

I have noticed I’m affected more when my head is directly in the sun. Which is where a sun hat comes in handy, the downside is the hat makes my head sweat and can make me feel worse, it almost gives a sense of over heating. 

I thought I was doing well on the rash side but on a morning walk earlier this week I developed one. I was in Turkey in 2015, I was in limbo with getting a diagnosis and I developed a rash on my chest, just next to my shoulder. The rash I developed this earlier this week was in the exact same place. At first it didn’t bother me, in fact I hadn’t spotted it, my mother did whilst we were in the sea. But, as the day wore on, it started to itch and it became hot. The heat from it could of just been my skin in general as my shoulders were slightly red but my Lupus rashes are generally hot to touch. The rash was slightly raised, it lasted longer than I anticipated, a day and a half. I kept applying factor 50 and Nivea Soft cream. I always find Nivea Soft soothes Lupus rashes, I didn’t think ahead to pack it but luckily the little shop in the hotel sells it. 

The rash on my left shoulder/chest.

I thought my sleep issues would have settled during the holiday, with being in the sun and around the sea but they haven’t. I usually sleep on my right side but last night I couldn’t lay on it. I had pain in my right hip, like stated, I sleep on my right side so I kept reverting back to it and being awoken by pain. It wasn’t just last night that brought poor sleep, most nights have been restless, just like at home. I woke up feeling very achy and a bit out of sorts so I had a late start, I just sat in bed munching on biscuits (Milka biscuits are delightful, they’d be even nicer with a brew though) and strolling through the internet.  

As the holiday goes on I am starting to struggle more. I’m becoming increasingly fatigued and starting to have an ‘unwell’ feeling, again, it’s a feeling I can’t perfectly describe. But after all, I’m no longer designed to be in the sun, I’m not meant to be sat in it, people must honestly think I’m mad for being here and in a way I totally am mad but you can’t say I haven’t tried it. Mum overheard a woman on the beach yesterday saying she declared Lupus on her travel insurance – so it’s not just me putting myself through blazing heat and putting myself at risk of dire symptoms. Maybe madness is a trait we develop when diagnosed? If I flare massively when I return to British soil then so be it. I’d rather flare with decent wifi, my dogs and Netflix than here, when I’m meant to be enjoying myself…if I do flare as soon as I land at least Lupus has the decency to hold fire until the holiday was over. 

I’ve reached the second week, all in all I think I’ve done well. Yes, there’s been bad days but there’s also been fairly good days. I’m still enjoying myself, which is the whole point of the holiday. But, I must go because I’m bloody red hot and need to get into the sea. 

The wifi is co-operating with me today so here is some pictures! 

Breakfast yesterday: a waffle with Nutella, fresh strawberries and ice cream. At least there was fruit, right?
A little feline friend I made on the beach last week.
Mum and I one evening last week.
The view I had writing my previous post.

Daily life with Lupus. 

I have shared my diagnosis story. If you want to read it to understand this post more I’ll leave the link.

https://memyselfandlupus.wordpress.com/2016/09/06/my-diagnosis/

Lupus has been mentioned in the media recently with Selena Gomez revealing her diagnosis. You might have heard popular line on House MD “it’s never Lupus”, I’ve found people have usually heard of it but I’m often asked how it makes me feel. 

This post is entirely dedicated to covering exactly that, how it affects me daily. I can’t speak for all sufferers as it affects each individual differently but most sufferers will be able to sympathise.

My aim for my posts is to help people, hopefully this post will reach somebody out there who has someone in their life going through this sort of thing. I hope it helps you understand that person better. Also, I hope it gets out to someone who is sick and who is looking for people like themselves. 

Aches: I ache most days, from head to toe. It feels like I’ve ran a marathon or been dipped in concrete. My whole body feels heavy. There’s no explanation for me aching, I don’t do anything physical enough to cause them. I used to do a lot of running, and I never ached as much as I do now. It’s just something that unfortunately comes with the Lupus territory. 

Joint pain: I get pain generally in my knees, elbows, shoulders and fingers. They often feel like electric shocks or just a dull constant pain. The odd thing for me, is that one moment it will be in my knees and the next it’s moved to my elbows and so forth. 

Headaches: Everyday I have a headache. Somedays it’s minor and others it’s a migraine, but everyday I have one. Obviously the worst is a migraine, I get white flashes in my eyes and feel so nauseous. When I say minor, I mean a normal headache, it starts little and builds up then it’ll die down again. I have got used to having one everyday, they are annoying to me more than anything now. 

Itchy skin: This is extremely annoying. I don’t have dry skin, it’s just another Lupus thing. I itch the most on my legs and back. Sometimes I scratch that much I cause bleeding. The best thing I’ve used to settle it is the Liz Earle Nourishing Botanical Body Cream. 

Dry eyes and mouth: This isn’t actually a Lupus thing, this is Sjogrens Syndrome. These are the only symptoms of Sjorgens I get. The dry eyes feel like I have sand stuck in them, a bit like when you have Conjunctivitis. I use Carbomer eye gel to help with that, for the dry mouth I just drink a lot of water. 

Pain in my eyes: This could be Lupus, Sjogrens or both. It’s a sharp pain in my eyes. It’s probably another form of a headache, I don’t know. What I do know though, it’s irritating and very painful, like head in your hands kind of pain. Fortunately they don’t last for long, usually up to an hour or two but they can occur numerous times a day. 

Fatigue: When I say fatigue I don’t mean I’m sleepy and need a 30 minute nap. I mean, lifting my arm up is too much and sleeping for nearly 20 hours straight. It’s fatigue that stops your daily life. I’ve often been labelled lazy and boring, I’m not I just simply do not have the energy to do anything but lay down.

Insomnia: You’re probably thinking, but you just said you’re fatigued? Yes but now and then I suffer insomnia. Usually it’s pain waking me up or preventing sleep or I’m just restless. This then encourages extreme fatigue, it’s a circle I can’t escape from. 

Poor appetite: Either because I’m too tired and pained to make food or I just don’t want to eat. This is quite common with Lupus sufferers. I tend to graze on food rather than eat a meal. It’s rare I finish what is on a plate. I’m often asked by family and friends if I’ve eaten and sometimes I need prompting to eat. 

Mood: Lupus and my other illnesses affect my mood. Somedays I feel very low and somedays I’m quiet. I make a conscious effort to not be snappy or mean to people, I can imagine if I didn’t make that effort I could be quite unpleasant. It’s a mixture of pain, fatigue and being fed up that I’m sick everyday. Family and friends know that when I’m quiet I’m having a bad day – thankfully they don’t take it personally. 

Rashes: I mainly get a rash on my right cheek, this is when I know things are about to get very unpleasant for me. It goes dry and blisters. I get little rashes all over my body, I’m grateful these don’t go dry and blister. I also get what I call pin prick spots (Petechiae) usually on my hands and thighs but I have had them on my chest too. Here’s a picture of the rash before it blisters…

Hair loss: My hair started falling out, nothing major thankfully but I do have naturally thick hair. It spurred me on to take better care of my hair. I started taking Biotin daily and using coconut oil as a hair mask, now I don’t have as much hair loss. My hairdresser also said my hair is in beautiful condition!

Swelling joints: My joints sometimes swell, usually my ankles. Sometimes it’s when I’ve done more than I should or they just randomly swell. 

Brain fog: Yes, it’s a real thing. I can sometimes start a task, stop for a break and not complete it because I’ve forgot what I was doing or that I was even doing it. Somedays I have no concentration at all. I also forget a lot of things. Sometimes I have no sense of time, I was an hour and a half late to an engagement party last month.

Bruising: This is a symptom from taking Aspirin. I take Aspirin to lower my risk of a blood clot, but a slight knock will more than likely cause a bruise. I’ll include a picture…

The sun: I know what you’re thinking, the sun isn’t a symptom. The sun can bring out symptoms, headaches, rashes, aches and joint pain. It also makes me feel extremely light headed and on some occasions has made my vision blurred. If it’s a hot day and I have to go out in it I have to apply factor 50 sun cream. I try to avoid the outdoors on hot days though.

Cold hands and feet: This is Raynaud’s phenomenon. My hands and feet are never warm, they go purple when I’m outside or in a cold room. When I go somewhere warmer they turn red, sometimes swell and sting. This causes me to have some issues distinguishing what temperature water is, what is cold to you is usually warm to me. I’m known for having ‘cold’ baths rather than hot because I believe the water is hot. 

Costochondritis: Is inflammation of the cartilage that joins your ribs to your breast bone. This causes sharp chest pains and pain when breathing. 

The thing with these symptoms is they’re random. They just happens and they come on very quickly. One moment my knee could be fine and the next moment I could be reaching for my strong pain medication.

The most frustrating part of all the symptoms, minus the rash (which isn’t always there) is you can’t see them. People often think I’m lying that I’m sick or think I’m being dramatic. It’s like having the flu everyday of your life, imagine that, sounds horrible doesn’t it? 

My life is spent trying to work out what I can do, if I go out with a friend I have to take something off my to-do list because I can’t do a lot in a day. If I have a busy day, I need 3 days to recover. 

Thank you for taking the time to read this post, I hope it gives you a clearer idea of how life is with a chronic illness.