my-life-now-with-lupus

[my-life-now-with-lupus]

I told you I wasn’t well.

When you feel unwell and in pain, it’s not a compliment to be told you look well.

You’re not digging for attention or compliments- just understanding.

When there is something visible to see, for example a sign such as a wound, a cast, a bruise even if it doesn’t cause you any pain there is an expectation it must hurt or cause pain- with no explanation required except the gory details of how it happened.

When there is symptoms these are invisible and rely on the individual to how to express them. Some may cry and wail, some may be stoic and hold that emotion within, some may try and verbally express it, and some may put pen to paper. There is a pressure to explain.

‘Seeing isn’t believing, believing is seeing’

- you don’t need to always see something to know it’s there.

[my-life-now-with-lupus]

Tired

Tired

I’m so Tired of being Tired. 

The energy it takes to complete those simple daily tasks.

The energy it takes just to try and be you.

Too tired to explain, too tired to explain. 

[my-life-now-with-lupus]

Believe Me

I didn’t choose this

I’m trying more than you realise

I don’t want this

I’m surviving 

I have changed- how could I not

The energy seeks out of me

The life in me fluctuates 

Gravity draws me down

I paint the face on

I go out to give 

To do 

To achieve 

I’m blunter, shorter, overwhelmed

And rapidly depleted 

My body doesn’t replace the energy it burns like it used to or like most do. 

When it’s spent it’s spent. 

I aim to spend wisely-

I Have to prioritise, justify, ensure. 

Some stick by you- support, care, and show kindness. 

They see your struggle. 

They know you’re still there - 

Trying to swim 

[my-life-now-with-lupus]

So, it’s still here. 

It’s no longer as wild.

I keep asking - are you sure? 

I’m all or nothing, pacing is becoming a repetitive challenge. 

Trying to achieve a balance- sacrificing, functioning, surviving, living.

Grieving for the life that you haven’t got the energy, memory, stamina, medical record for.  

Things you took for granted, which now fluctuate making it difficult to make plans, to commit, to show up. 

Hard to Accept that it’s difficult for others to understand when not wearing your shoes. 

The invisibility, the need for validation but not wanting or seeking sympathy or attention. 

I should be doing more taming, 

But I want to kick it out the park. 

I want the sprint finish- not the life marathon. 

It’s still here. 

[my-life-now-with-lupus]

The beginning…

Goes back longer than the clinical tests.

Looking back there had been indications for a while- which came out as a jumbled array of symptoms that came and went at varying degrees.

I suppose the main frustrating differences I noticed over time was my decreasing ability to bounce back, increased napping time, and decrease in exercise tolerance.

A low White cell count was picked up on some blood test, and repeated for a while on a monthly basis- it didn’t improve, but didn’t decrease rapidly enough to raise any concern.

Months later a significant episode of chest pain occurred which led to bloods being flagged up my haematology with some abnormalities. Again they repeated for a while… and then post infection with the Covid virus they improved (and hold the record of my best bloods to date!). A scan showed an enlarged spleen but no further treatment was needed.

I knew I wasn’t right…but delayed the further bloods ‘until I felt better’. When they were eventually repeated again haematology flagged them up- that led to a lot more bloods, various scans and biopsies of lymph and bone marrow.

Once the nasties were excluded - haematology passed me over to Rheumatology and finally treatment could begin, though decided that joint management was more appropriate just to make it a tad more confusing.

It’s early days. I’m only a few months in. With the current pandemic and pressures on a long-standing under funded NHS, the treatment regime is no where near as quick as I would like it.

I’m keen to just crack on- and get my old self back on form. Patience has definitely been waning.

I’ve learnt a lot from seeing things the other side and I hope that’s made me a kinder person, I like to problem solve and be a fixer— I admit I like the challenge and hence why I chose the career path I did.

This experience has made me realise that patients though desperately just want to be fixed, a lot of the time they need others to be kind, gentle, non- judgemental, and just most importantly listen.

The priority of concerns for ED, haematology, and rheumatology all vary - and mainly are based on clinical tests. I don’t need tests to distinguish a good day and a not so good one- I feel it, and now understand more what is meant by patient centred care.

*on average it takes 8yrs for SLE to be diagnosed.

*Many auto-immune conditions give bizarre symptoms and bloods that don’t follow ‘normal’ pathologies.

*I’m not the only one- many people live with conditions you can’t see or understand so have to gain a good patient history. Something the rheumatologist was particularly good at.

This blog was my contribution to raise awareness of Lupus for Lupus Awareness Month October 2021.

Life isn’t all lupus- it’s good, bad, ugly and beautiful- and without the ups and downs how do you really live life and experience the ups properly ?

Still smiling, just a bit more grumpy…

Thank you 🙏 for reading.

[my-life-now-with-lupus]

Work…

Unfortunately it is a must… and don’t get me wrong I enjoy my job but there is so much in the world 🌍 I want to do, and though work gives us the pennies to do those things it also at the same time takes away our energy and time to do it.

At the moment energy and time go so quick- though I’m moving slower.

Energy…

It’s quickly zapped and some days the simplest of tasks are challenging. Some days I think I can climb mountains and then an hour later climbing off the sofa is enough. At the moment my energy is focused on building up the time at work towards full time hours and it does worry me that I may not be able to achieve this.

One of my biggest fears, is never having the energy I had before to do stuff- and always having to live with a slower pace of life.

That’s the thing with long term conditions I have yet to accept - there is no cure - you don’t magically get better - you just find better ways to manage it and reduce the ups and downs… but there tends to be a plateau or gradual descend.

I’m willing - just brain and body aren’t always able to fulfil my wishes.

Time…

There’s no doubt I’m moving slower, tasks are taking longer- it’s affecting me both mentally and physically. But time seems now to go faster than it ever did before. Days just aren’t long enough to get everything I want to achieve in. No longer am I early or on time for stuff. I feel like I’m constantly chasing my tail, and no where near organised as I want to be.

I’m taking a slow build up in work hours though to many it’s too fast but I’m keen to find out my limits and what I can and can’t do as I want to be able to plan and be able to fit in exciting things as well as eat/ sleep/ work.

What is life if all work and no play ?

We all need a good work/ life balance and need the energy and time to achieve both… not being on full form or firing on all cylinders just highlights this more.

[my-life-now-with-lupus]

Sometimes we are so keen to reach our end goal, we forget to look back and see how far we have journeyed and what we’ve achieved.

I am not as well as I would like to be and it’s very frustrating - but I’m in a damm better place than I was a few months ago.

My nose doesn’t bleed going up the stairs or when I eat… no more having to shove bits of tissue up my nose under my mask 😷 whilst at work either.

My heart doesn’t go at 140bpm walking on the flat or just to go to the loo!

I’m no longer having warning messages off my watch post exercise that my heart rate is still elevated hours later.

I’m still bruising but no where near to the extent I was.

I feel nauseous on exertion and when tired, but don’t feel like I need to be sick like I did before.

My appetite is back- I can finish my dinner, much to Rob’s dismay as he no longer gets any leftovers.

I can stay awake all day- fair enough I’m grumpy and horrible by teatime but it’s doable.

I can now achieve multiple things in a day and have some adventures if I give myself time to prepare and recover- previously just getting up/ dressed/ showers / walking the dog was enough.

I can focus on things for longer than 5mins- I can read, I can watch a tv program all the way through without getting lost in foggyness.

I’m definitely heading in the right direction- not sure what is going to be normal and if I can reach it.

But I will celebrate how far I’ve come.

Cheers 🍺 x

[my-life-now-with-lupus]

I’m sorry I can’t do things as quick as I used to or as well as know I have the ability to do…

Its not that I’m not trying, but as willing as I want the mind and body to be it doesn’t always do what I want it too and it seems to burn vast amounts of energy very quickly with sometimes very little to show for it.

I seem to be floating in the mist… longing for the clearness of the mirror more than I like.

[my-life-now-with-lupus]

I am very much learning myself about lupus, and keen to help others understand it as much as myself.

When i see other people’s stories and blogs it’s really comforting to know it’s not all in my head.

I’m sure to some I look too well, and can do too much to be ill. I’d be lying if I haven’t thought that of others myself at times. I’ve passed comment that now I see could be hurtful, and lack understanding or empathy.

Who would have thought telling someone they look well could be upsetting? But it is at times.

Gone are the days of blusher… I spend time now covering the ‘natural glow’. No need for sun bed either… the high bilirubin in my bloods gives me a more tanned appearance.

The weight loss initially felt great… but I rather I didn’t need to buy new bras!

As for doing too much… yes 👍 I am, I’ve always feared laziness and not making my time productive.

I take advantage of when my head is clear to do what I can- and that is seen, what less people see is the grumpiness, the mood swings, the napping, and the recovery or even prep to achieve those days. Ask the suffering other half he bares the brunt of it. But I too have questioned others in the past myself that have met friends for nights out whilst off sick - to me sick was in bed not able to get out- oh how you fall.

I do hope that this blog and accounts such as the one in the picture help to raise awareness not only of lupus but for the many other auto immune diseases that are a lot of the time invisible but very much present .

[my-life-now-with-lupus]

Cryotherapy, have you tried it yet?

I currently take between 13-17 tablets per day, but my biggest instant hit to ease my symptoms is just three minutes in a booth being cooled at temperatures of -120c+.

M @ Lincoln Cryotherapy has suffered with ‘brain fog’ and ‘cognitive impairment’ as part of long Covid and the symptoms he describes as very similar (remember no two people are the same) to what I experience. Like myself he finds the cryotherapy a great healer in helping him think sharper and clearer.

It also helps with the obvious heat and inflammation in the joints- but also the inflammation that in lupus resides all over you.

I am still learning all the amazing effects this therapy has… after spending 10 days wondering if I had a DVT - my symptoms disappeared post cryo this week!

I’m all for these alternative therapies… there is so many side effects of medications and such a balancing act to get it right.

Next on my list is floatation!

[my-life-now-with-lupus]

Is it the lupus?

Should I be concerned about that because of the anti phospholipid syndrome I have alongside it?

Or is it just a bit of cramp?

Lupus isn’t particularly picky… though it does tend to have areas of me it favours. It basically attacks every part of you… the symptoms fluctuate and it can make it very difficult at times to figure out what is new, alarming or just normal.

Wrapping oneself up in cotton wool is neither practical or aesthetically acceptable behaviour- and definitely does not fit in with my lifestyle choices.

And I choose to Live a more active and risky lifestyle than most. I understand the risks, and I feel it. I’m not immune to being scared and wary when those symptoms are flaring.

It may appear I’m not listening 🙉 to those around me telling me to slowdown, take it easy, and rest. I have always lead a busy life with constant buzzing around- to go from one extreme to another is a big ask.

Just remember my snails 🐌 pace is a lot of folks hare… instead of climbing the highest mountain I will pick the 3rd highest ;) but I won’t lay low in the valley.

[my-life-now-with-lupus]

I’m mush today, extremely unproductive, head’s a shed.

Spent 3hrs sat on M1 last night on way back from a two day work conference, and after a busier week that I’m used to I was not looking forward to the 2hr drive home but the fact it took 5 1/2 hrs and I didn’t get to bed til gone 11pm and It’s floored me.

I even forgot my regular tablets today (didn’t forget the paracetomal/ ibuprofen).

Too late to take the steroids when remembered… they give insomnia…. So decided post nap 💤 to just have some wine- and of course chocolate.

Can’t be good all the time & in the short term I’m sure I will feel better ❤️‍🩹.

Easy wins 🍫 🍷

[my-life-now-with-lupus]

‘And the young lady assisting and driving the ambulance 🚑 did not suffer fools gladly nor take any prisoners’ , In a Thank you card from an ex Army Captain who was having a MI.

This is probably the best compliment I’ve ever had.

I am often quiet and shy, I give everyone the benefit of the doubt, I give chances, I put others needs before my own, and go out of my way to do so. Even if this confuses others who don’t understand it.

But we all have limits- and when I go, I go. Unfortunately for some this fuse has shortened, though I still will do what I can for folk - I haven’t got the energy to debate a point and try and provide alternative viewpoints, possible solutions, and give sometimes whatever is needed.

I compare it a bit like as folk get older and they become less tolerant and more to the point.

Thinking about it I wonder if it’s that it’s because them and those of us with long term conditions are more aware that our time and energy is precious… and we are saviouring it for its best use.

I’ve seen the changes also in those that are palliative.

I am not going to apologise for it.

I’m not stoic. I wasn’t born in a war era where it was required-I don’t need to pretend or crack on with it.

I live in a world where I believe it shows strength to share your vulnerabilities, to be open, and talk about difficult things. It’s not being negative - it’s about sharing experiences and lightening the load, and most of all helping others in similar situations (no ones is the same- worse or better it’s all individual to those involved so don’t compare).

If I’m not as patient or laidback as I was- first try feeding me… and if that doesn’t work, probably just need a bit of help.

I’m still learning how to ask for that.

[my-life-now-with-lupus]

Life is an adventure, and with lupus I’m finding it’s more spontaneous… it is difficult to commit to plans as I genuinely don’t know if I will be able to achieve them. This is really hard for me as I like making plans and being organised. I also don’t want to let people down and be a ‘sick note’ or a ‘bailed’.

Yesterday i had a conversation with someone who was explaining their neighbours experience of having lupus and, he just got it- and to hear someone talk with understanding about how you are feeling and your days to day life was really uplifting. Ta C.

It made such a difference, I find I explain myself a lot and I don’t want it to sound like I’m moaning or being negative - it’s frustrating to me folk don’t get it at times. I guess you can’t truly understand what someone is going through until you walk in their shoes.

Sometimes I can climb mountains ⛰, sometimes just climbing in and out of the bath into the shower is enough, some days my head is clear like a summers day, others it’s unrelenting fog. When I get tired and my energy is spent- there is no back up. Every day I feel sick- it’s why I eat so regularly as I find it eases the nausea but sometimes even eating is hard. I get chest pains if do too much, and it feels like I have a small child sat on my chest all the time- but I still walk and occasionally run (though not always the best idea).

But I am trying all the time to live my life as normal, and I won’t stop it doing what I want to but I do have to be sensible about what I can achieve and what is safe. I know there’s things I factually can’t do as the are restrictions in place, there are things I can do but now more risky, and there are things I do everyday which are just a bit slower/ take longer/ bit harder now.

But some days I am on fire 🔥 and I may be able to achieve everything I used to- and I’m hoping with the right medications and alternative therapies I can kick it into remission so these days become more frequent.

The last thing I want is sympathy - just folk to understand that I am alright :) , just not the person I was, and one that can change not only day to day but many times within the day too.

[my-life-now-with-lupus]

This morning I’ve been releasing my Tiger with lots of mini meltdowns…

I have little patience at the best of times but today I have been letting out Roars and throwing things like a toddler.

The thing is everything I do right now takes a bit more energy and time…which until the treatment regime kicks in and I manage things better is of limited supply. Especially after a poor nights sleep.

Though it has been very good of HSBC to suspect fraudulent activity and freeze my current account it is not the best time of the month post payday to do it as I’ve got payments bouncing all over the place. I’ve had to confirm with the fraud dept the payments were all legit… including the ‘one’ to Roly’s Fudge 😱.

I also had an email yesterday to say my requested extension for my MSc had been declined- this is my own fault I had somehow forgotten to upload evidence of my request. Not only do I feel ridiculously stupid for failing at a simple task I now have to go through the appeals procedure and frustration of uploading all my medical letters ( there’s quite a collection now ) and fill in more paperwork. All of which is using energy I wanted to save for watching the Imps play later, and to actually see friends I’ve not seen for a while.

Simple tasks to rectify when your heads on it… but at present proving ridiculously hard work. Unfortunately for The other half he has been sat across from me at the kitchen table and has had some unexpected catching practice… he’s a good egg 🥚 he actually returned the bank card after. Though as the morning has gone on has just moved out the way and politely asked with all this medication I’m popping if there’s a ‘chill pill 💊’ I can get?

I’ve not even made it to 12 today… but I want to be on form for the footy and seeing friends, I want a snap at my old life, so it’s NapTime and hopefully I will wake in more of a puppy mode!

#seesawing #swingsandroundabouts #upanddown #moody #lupuslife #isthereapillforthat #tired #fatigue #lowbattery

[my-life-now-with-lupus]

I’m beginning right here in the present...

This morning has started as a good day- mild headache, slightly achey joints but appears to be my new normal, though i’m still struggling to grasp what is or will be my baseline. 

I’ve swallowed 8 pills with my breakfast, not a number i wanted to hit until i was at least 80, however I’ve learnt I’m not only a much nicer person by taking them but i can also see the day rather than the inside of my eyelids. 

Today is the day I take the first ‘proper’ steps back into work, I’ve been off a long time now, longer than i would have ever imagined- but tests, diagnosis, medication, recovery all seem to take soooooo long. I’m not generally a patient person but I’ve not been bored, twiddling my thumbs, and my house is definitely not spotless. Just getting up and doing simple tasks has felt like work, taken a long time, and the days have flown by, and most days i can’t tell you what i have done as my memory has been so poor. But I can tell you I have always felt busy and that i am working hard. This isn’t laziness - I just don't have the blood cells and life in the battery to go at the pace I used to. 

Talking of pace it’s something i am really struggling with- I’m an all or nothing person...so constantly seesawing between achieving and meltdowns at present. To be on an even keel is meant to be the target- but not ready to surrender my whole self to the lupus just yet.

That’s the thing with lupus I’m struggling to come to terms with - it seems to seep into every part of you, and your life, I thought it would be an easy fix once got the diagnosis with medications but living with it longterm is the real challenge... 

It’s even made me consider my political viewpoint about private healthcare! (I can hear my brother R ‘i told you so’ in the back of my head).