All change…. & cats!

Sometimes fatigue hits me hard for a few days, this last weekend has been one of them.  I’ve slept like it’s going out of fashion since Friday, guessing it’s finally passing as I’m writing this at 5am! Feeling tired but not sleepy, but I think the exhaustion has burnt itself out for a few days, for which I’m grateful.

Annoyingly this particular blip hit half way through RA blog week, so I only completed four out of seven nominated blogs.  I may pick up on a couple of the other titles soon, as I still have ideas in my head ☺

However some great news has cheered me up today, so I am hoping my energy continues for a few days. I finally had the call I’ve been waiting for, I have an official move in date of 1st October, my bungalow is ready!!  Trying to get excited about this was hard today, it felt like I was trying to push the world uphill, but this (early) morning I’m planning and smiling, I’m really looking forward to being in my own home again, and best of all getting my beautiful cats back home with me.

If you’d have told me in June I’d be in this B&B for the homeless until October I’d probably have broken down.  Don’t get me wrong, I’m hugely grateful for the support from my local authority, they have been amazing.  But it’s been a very long summer!

Still, I made it.  I’m very much focused on the next couple of weeks now, turning this new place into a home for me and my cats.  It’s the little things I’ve missed, having my own cooking stuff around me, using the dvr, just having my own clothes & books around me.  Ohh and my bed! I cannot wait to get back into a decent bed ☺

I’ll take it one day at a time, I have this weekend before my stuff arrives out of storage on Monday to get a feel for the space and what will go where, and I’m hoping (if my hands allow) to just slowly paint one wall in the much needed wet room, I’m determined to take away that hospital look!

I know I’ll need to pace myself with unpacking, thankfully the removal guys will put everything in the right room, so I can just work through the boxes at my leisure.  I also know I have friends I can call on for help, they have come through so amazingly for me this year, I’m incredibly fortunate. 

So, hopefully the next blog you see from me will be from my lovely old sofa in my very new home….. With these little munchkins demanding my attention  ☺

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Five things I have learned.. #RAblog week #4

Today’s #RABlog week prompt is as follows…

Five things I have learned – write about the five things you have learned about yourself, or RA. Perhaps you have learned what things like physical pain, injections, or morning fatigue are like? Perhaps you have learned new things about yourself?

RA has made some huge changes to my life over a very short space of time, so my five things learned are personal, though I suspect not unique, to me…

1. Status & money just aren’t important – I obviously don’t mean I don’t need money to live,  this is probably the hardest thing to put into words, but my priorities have changed completely.  I’ve never been about the big ego or being flash, but I worked really hard for my career and was comfortable because of that. For a long time I almost subconsciously defined myself by my work, my life was built around it.  Having to stop working in March due to RA was emotionally as well as financially frightening.  But I’ve had a lot of time to think, and I realised it just wasn’t important, my focus has changed.  I want to return to work as soon as I am able, but perhaps in something more personally rewarding & fulfilling. As I am likely to be off work for some time, at least until I hopefully find a med that controls my RA, I have almost the ‘luxury’ of rethinking what I want to do. That’s not an opportunity many get, and I intend to use it well.

2. I couldn’t survive without my friends – I’ve seen many people say they lose friends through RA, it’s easy to become isolated when you can’t always be relied on to turn up when invited.  Maybe I am just very lucky, but the people I count as my closest friends have each been a fantastic support in different ways, and a couple of people I considered acquaintances have proved to be very good friends.  Trust me when you need helping packing, cleaning and moving because you can’t bend, kneel, lift or use a hoover you find out who’s really there! I love you guys, you know who you are.

3. My GP is an absolute star – I sort of knew this already, I’ve been with her over three years and she’s always been compassionate and supportive, through both mental & physical health problems.  When I first went to her with a suspicion of RA, she listened, agreed, promptly ordered tests and has been a great liason between myself & rheumatology.  She knows me, she spots when I’m down, she asks about my support network and cares how I am feeling. No appointment is rushed, no medical topic unspoken. I would just be lost without her. 

4. When you think the world is ending, it doesn’t – this sort of links to my first post, I have lost my mobility, my energy, my income and my home.  Yes, this has exacerbated my depression & anxiety, BUT…  I’m still here! Still standing, still learning,  still enjoying the small stuff and dealing with the bad.  Things are starting to turn around a little with a new home & rheumatologist this month, however different it may be from what I was expecting from this year, I’m still living, smiling & occasionally kicking butt! Please believe me, things are never as dark as they seem.

5. People actually enjoy my writing! – I think for me, the huge positive that has come from RA is this blog.  I’ve always enjoyed writing, bits of fiction, occasional poetry and just playing with words, I love that language allows us to express ourselves, to share with others our experiences and knowledge.  However I’d spent years just writing for me.  Somehow this blog began, mainly as a way of me processing what I’ve been going through, it just helps me to write things down.  I never expected in a million years to receive some of the amazing feedback I’ve had about my blogs, I can’t tell you how magical that is for me, so thank you so much for reading  xxx

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Explain Your RA.. #RABlog week #3

Day 3 of RAblog week, our prompt is…

Explain your RA – perhaps you want to tell someone else, (doctor, sibling, child) pick a person and decide what to tell them. You might want to tell them about living with RA or what it is like to have RA? Perhaps you want to write a letter to a fictional person. You might also choose to write to a newly diagnosed person about life with RA.

I’ve been pondering this one for days, who to write to? Friend, family, doctor, rheumatologist, physiotherapist? But they all at least sort of understand.  So, a stranger then, someone who needs understanding but doesn’t have it.  Then like a light bulb moment it hit me.  To all strangers, to those who glare at us for having disabled parking, who moan about us taking benefits or think we’re addicts for wanting pain meds that are strong enough to be of use.  This is for you. 

Dear Stranger,

I’m asking for just a few minutes, that’s all.  A few moments when you put your prejudice aside and listen.  When you allow yourself to stop judging, and hear me.  I believe it will help both of us, shared understanding certainly brings empathy and compassion. 

This time last year I started feeling tired.  Sounds so innocuous, we all have off days. By December I was tentatively diagnosed with RA, and at this point I was getting really bad inflammation and joint pain, I couldn’t move my left shoulder, or use my hands.  I had to ask people to cut up my food on occasion, just think for a moment about how helpless that might make you feel?

I was officially diagnosed with RA in March, and by this time I had done quite a lot of research, and to be honest I was scared. Really scared. I was having more & more time off work, and I was now getting joint pain all over, feet, knees, hips, elbows, shoulders, wrists, hands, lumbar spine.  On top of this the fatigue was getting worse, causing ‘brain fog’, making holding meetings or working on contracts for work almost impossible, I would lose words mid sentence, concentration on and retention of facts and numbers was just not happening.  And I was so, so tired.

I was also aware by then of the fact that RA is systemic, meaning it can attack elsewhere in the body, affecting the eyes, heart, lungs etc.  And just to top it off the first med I was prescribed increased my risk of developing lymphoma, losing my hair and liver damage.  It’s a tough disease requiring tough medicine.  I was signed off work in March, meaning I lost my income.  I live alone. 

So yes, I have had to claim benefits.  I lost my home, and I’m very fortunate the council are shortly providing me with an adapted bungalow.  Believe me no one wants to return to work more than I do, at the moment it’s just physically impossible. I can barely walk on crutches and I’m in pain 24 hours a day.  Yes, I also have a disabled parking badge.  I couldn’t function without it. 

And as far as I’m concerned that’s exactly what our benefit system is for, it’s a safety net for those, like me, who through no fault of their own need financial assistance just to live. 

RA is known as an ‘invisible illness’. Symptoms aren’t obvious from the outside. So please, can I ask that next time you see someone who looks ‘healthy’ using a blue badge, or having to  cease working and claim, you stop and think, just for a moment.  I am ill, the last thing I need is to be judged. 

Kind regards,
Denise (on behalf of all with RA).

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Managing Fatigue… #RABlog week #2

Today’s blog week prompt is this….

Managing RA fatigue – We all know that fatigue is a big part of many of our lives. How do you manage that fatigue? Perhaps you like a warm cup of tea or a hot bath. We all have our coping strategies. Describe anything you do to help with fatigue.

That seems like such a small question when in fact it’s ridiculously large, fatigue has been my own personal demon since way before diagnosis, it was the first sign I had that something was wrong, and it started this month last year.  My one year fatigue anniversary, whoop-whoop!

I need to be honest here and in the interests of ‘full disclosure’ (lol) start by saying that my GP is in the process of diagnosing me with ME/CFS, so my fatigue may be more excessive than RA fatigue alone. 

So, how do I manage fatigue? I’ve been told by doctors and rheumatologist’s that fatigue is the hardest symptom to treat.  It’s difficult to explain to anyone who hasn’t suffered with it exactly how debilitating it is.  The fatigue is the main reason I had to stop working in March, the joint pain and mobility were obviously big factors, but the fatigue was the final straw.

I could use a hundred analogies and none would suffice.  It’s like carrying a weight, walking through water, swimming against the tide, trying to move mountains. The closest I can come is that fatigue makes me feel heavy, too heavy to move or think or just stand up.  I don’t want to eat or drink or talk or write, everything seems to involve superhuman powers that I just don’t have. 

If I’m honest I’m not sure I do manage my fatigue, I’m not sure that’s even possible.  What I do is cope.  I am used to the very bad fatigue days now, I usually have two or three a week minimum, so I’m prepared.  I keep in things like cereal bars, bananas, grapes and bottled water, really easy stuff to keep me going, there is no chance of cooking! I’ve always been an avid reader, so I make sure I have books to hand, and I’ve just discovered the magic that is Netflix when one is unable to leave the sofa 🙂

I no longer worry about these days, I used to find them incredibly stressful, because I’d feel guilty, adults don’t just take pyjama days, that’s not productive!! Actually I’ve discovered it’s the most productive thing I can do.  I’ve learnt to listen to my body instead of years of conditioning to “push on through” or “not be lazy”. If I take these rest days when my fatigue flares up, I am a better and more relaxed person because of it.  It also gives me energy for later days when I can function, rather than never having a minute when I’m not exhausted. 

I realise this is not considered ‘normal’, but it has become mine and I’m learning to live with it.  So if you catch me in my pyjamas at 4pm, believe me I’m not being lazy, I’m giving myself the best self care that I can.

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A Day in my life… #RABlog week #1

It’s ironic that, with the first blog due today (Monday) for RA blog week, I’ve been in a flare all weekend and am now trying to type furiously at the almost final hour… 10pm is still Monday, right?

I had a lovely clear weekend planned, I was a even cat-sitting at a friends with a sofa, Internet etc, I was sorted! And then it hit, I’ve barely had the energy to take my meds, unfortunately we all know those days! So I’m literally deciding as I write, do I cover a day like today, or a slightly more ‘normal’ day?

To be honest I could sum up today in a couple of words, sleep, pain, sleep, so let’s skip that and look at a slightly more average day.  I’m not sure three word blogs are quite the thing 🙂

My first thought when I saw the topic “A Day in my Life” was how short my days generally are – at least the functioning, thinking, moving part of the day.  Someone online mentioned a three hour window recently, and it immediately resonated with me.  It takes me an hour or so to come round in the mornings, I was never an early bird but now I’ve made slow mornings an art form!

So let’s say I wake at 10am, by 11am after a coffee or two I might be ready to face the shower.  This does help ease the aches, the warm water always soothes even the sorest joints for a brief while. Then there’s getting dried (awkward when only one arm is moving properly and you can’t bend), sitting down to rest, then getting dressed, sitting down to rest (I’m not exaggerating here, the process exhausts me),  and that’s without dealing with my hair.  On a lot of days it just goes up wet, blow drying can seem just too much. 

So hopefully by 12 noon I’m in one piece and ready to face the day. I say hopefully because on worse days I’ve been known to hit this point and just stop – my body says no. 

So this is start of the ‘three hour window’,  I might go out, meet a friend for lunch or coffee, see the physio or GP or maybe go to a store for a book or a little food shopping, small things I know I can do without walking too far or wearing myself out. Some days I make four hours or so if I’m sitting chatting with friends, but five hours is my absolute max even on a very good day.  By that point I will physically droop.  I have to make sure to leave with enough energy to get home and get into bed.  Of course if a joint is really flaring this can shorten things dramatically, pain is a great incentive to get home!

It’s so, so hard to explain how doing what most people would see as a day of leisure leaves me on the floor.  I also really struggle to do two of these days in a row, so I try to plan hospital, physio and GP appointments as well as coffee or lunch on alternate days, so I get a day at home, then a day when I’m out. 

There is however a big upside to this.  Because I’ve got used to this window I have to work within, I do make sure I prioritise what I spend my time on.  So I plan around the medical appointments, so I can see friends, or family, sit somewhere with a nice view, enjoy the sunshine or just have a really good coffee while reading.  That leaves me the evenings when I’m resting for writing if I’m in the mood. I am probably more careful about how I spend my time now that at any other point in my life, and that’s got to be a good thing!

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Poem… Would I?

If today was the end of all I could be, would I be replete, looking behind me?

Was I loved so well, did I love at all, was my passion as wild as my mind can recall?

Did I run with the wind on a hot summers night, did I laugh at the storms and draw heat from the light?

Did I dive in headfirst, embracing the chill, did I swim with the tide or against for the thrill?

Did I ride with abandon, embracing my fate, or weave a path of my own, only one I could make?

Did I fly t’ward the stars, and smile with the moon, did I start life too early and leave it too soon?

Did I chase down my dreams, did I hunt where they hide, did I once try to seize them and keep them alive?

Did I love with abandon, my soul soaring free, did I sing every word as if written for me?

If today was the end of all I could be, would I be replete, looking behind me?

Was I loved so well, did I love at all, was my passion as wild as my mind can recall?

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RA & I are in a relationship!

I realised I’d posted an oddly worded comment in a group yesterday, saying “I’ve been with RA for about ten months”.  I read it back and almost laughed, because it read like we were in a relationship.  Then it occurred to me that we very much are – and good or bad RA and I are together for keeps.

So I began to think about RA in relationship terms (yep, I couldn’t sleep, this is what my mind does at 3am!).  What would I normally look for or expect in a relationship and how does RA measure up? We’re ten months in, we know each other now, surely time to reflect? So here goes……

Comittment & loyalty – RA scores top marks here, it has waltzed into my life, swept me literally off my feet and promised to never leave.  Nothing I do or say will ever drive it away, good days and bad days it’s right here with me. In return I’m just as committed to kicking it’s butt.

Closeness – RA is with me, body & soul, it occupies my mind and my senses night and day, RA and I will never be alone again.

Support – I feel I should give RA full respect here as it has the best intentions. RA is the staunchest defender I have ever had, it patrols my body and repels all threats voraciously and with a fervour seldom seen. However RA loses marks here for being very, very stupid. It is unable to differentiate between friend and foe, and just throws tantrums randomly at will, causing irreparable damage.

Laughter – Oddly RA is quite good at generating this, RA totally gets that I have an ironic sense of humour, and just knew that I would see the funny side of getting liver damage from meds during the one time in my life I’m not drinking! It also appreciates that it is amusing to be stuck in a hotel bath for half an hour, or to slip on the wet shower tray.  Oh how we laugh, RA & I.

Honesty – It has to be said RA occasionally tricks but it never lies.  It let me know from the start the kind of pain it would be putting me through, and led me almost gently into the debilitating fatigue that is now such a big part of our life together.  Now and again it teases me by giving me a couple of low pain hours, or a short burst of energy, but it never lies and I know it will always come back to me.

Romance – this is probably RA’s weakest area. It’s doesn’t do socialising or meals out, hates travel, and dislikes long walks in the countryside or strolling on the beach.  It’s not fond of cooking or holding hands or writing long loving letters either.  However it does enjoy snuggling up with me at night just so I don’t forget for a moment it’s there.

Hmmmm.  Looking at it this way you’d think RA & I had an almost perfect relationship, which is very far from the case! Perhaps one day I’ll learn to accept RA’s ‘little quirks’, but in the meantime if someone spots a divorce (cure) do let me know!!

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