Flying the Spoonie Way!

Posted on by SingleRheum

I’m in beautiful Cyprus at the moment staying with family, and someone asked about how I found the flight now I have RA and Fibromyalgia with mobility issues. I’ll share my tips as it’s absolutely doable, it just takes a little thought and planning, especially if like me you travel alone.

1. Use Airport assistance ♿ – it’s free of charge and I couldn’t travel without it.  You get transported in a wheelchair right through airports both ways.  An absolute must, it saves spoons and keeps pain levels down.

2. Book extra legroom seats. Worth the few extra pennies,  it does make a massive difference to how much you can wriggle and stretch, very important if you don’t want to arrive as stiff as a board!

3. Hydrate.  Lots.  Water is your friend on a plane – that actually applies to anyone – alcohol is so dehydrating.

4.  Face mask.  Yes, you probably look a little nuts, but when you have a suppressed immune system you do not want recycled germs. Planes are the worst. I always wear one when I fly – paper ones like dentists have, cheap as chips. Pop on some shades too & look mysterious 😉

5. Neck pillow.  I have an inflatable one, my neck is affected by RA and it saves so much pain, even if you don’t sleep it helps you support your head. I always book a window seat so I can ‘lean’ and get comfortable.

6. Meds bag.  I have a large multi zipped handbag I use to transport my meds – never put them in the hold, always carry on.  Take everything in original packaging with prescription labels attached,  it saved me a lot of odd questions on a complete bag search last time! I include meds, BP monitor, tissues, voltarol gel, pain relief etc.  Only thing that goes in the hold is oxycodone as it’s liquid. You can get notes from GP to allow you to carry on but this was just easier.

7. Give yourself permission right now to have “rest days” whilst your away.  It’s really,  really easy to overdo it, and then you end up spoiling days on end. Let your schedule be as flexible as it can be,  it’s better value to fully enjoy 11 days out of 14 rather go all out and miss half the holiday.

I’m in Cyprus staying with family, and I know I will spend tomorrow on the sofa because I’ve had two fabulous but exhausting days with my nieces/nephew.  They go back to school tomorrow so I can rest :mrgreen:

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It’s very important not to guilt trip yourself into a painful flare,  by pacing and resting you will relax properly and enjoy more of your holidays – after all that’s what they’re for!

Happy Holidays!

Narcissism or Progress?

Posted on by SingleRheum

A really interesting question was raised in a forum this evening (thanks Lisa). One of those moments when you’re pretty sure you disagree with a point that’s been very well made but you have to stop and think, why?!

I’ve been struggling a little with ‘bloggers block’ recently so I’m actually doubly grateful to the lady who set my writing brain in motion.

In essence she asked if, in today’s society, we as RA patients have become narcissistic and lazy. Looking back at her grandmothers’ with RA who farmed, harvested crops, made canned goods and ran a family with time for everyone to feel loved and no complaints, she feels that we perhaps focus more on what’s wrong instead of counting our blessings.

“Sometimes I think my grandmothers with their knarled little hands dealt better…. … and continued to live and love life”

So do we dwell too much on our conditions? On the face of it a not unreasonable question, but then I applied it to myself and my instinctive response was an immediate no. So now I have to process why… Or work out if I’m just self delusional!

I think we are comparing apples and oranges. Our grandmothers lived in a very different world. Mine was born in 1905, well over a hundred years ago. Home electricity would not become commonplace for another 25 years. Women having equal voting rights was still 23 years away and there were another 43 years before the National Health Service was created. Your choices for medical care in the UK were private for the rich, or relied on charity for the poor.

I’m going to digress a little here, please stick with me. In 1914 Rheumatoid Arthritis was believed to be caused by Tuberculosis. Intravenous Gold Therapy was used with RA patients simply because it worked for TB. A clinical study in France in 1932 proved that, accident or not, it had therapeutic value. In 1948 after years of research with biochemist Edward Kendall, Dr Hench of the Mayo Clinic in Minnesota tried Cortisone on an RA patient for the first time. He and Kendall were awarded the Nobel prize for this breakthrough in 1950.

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But still clinical treatment was for damage after the fact. Not until the 1980’s was Methotrexate, the first DMARD (Disease Modifying Anti Rheumatic Drug) introduced. In the later 1980’s research was making breakthroughs, the TNF (Tumor Necrosis Factor) was discovered and new treatments started to be developed, leading us towards the biologic options we have today.

Fascinating stuff right? But it has a point. My theoretical grandma with RA would have been 45 in 1950. It’s fairly common for people to be diagnosed at around this age. Her only option for treatment was cortisone. There was no way to stop the crippling damage. Fast forward another 30 years to her 80th birthday in 1985 and maybe, just maybe, she would have been offered Methotrexate for her final years. But much too little way too late.

So let’s think about her options as this debilitating and crippling disease with its pain and fatigue took over her body. Societal norm was to keep medical matters private. You didn’t mention things to your family, let alone friends. You put up and you shut up. So, feeling alone in her pain she carried on. There was no other option, cooking for the family, looking after the grandchildren as they came, washing and cleaning daily because it was women’s work. Who else would do it?

I was born in 1970, and I was diagnosed at 45. But my life is very different. I have washing machines, computers, newer medicines and diagnostic tools, the Internet and rigorously trained doctors with a wider knowledge of RA. I don’t have family next door and children to look after, but I’ve had to work all my adult life until my disability made that impossible.

But you know what I think is most important, in some ways way even more so than the newer drugs and research? I don’t have to suffer alone or in silence. I can reach out to my friends and family for help, they know what’s wrong because it’s OK to discuss health issues openly. I can reach out through forums and blogs and twitter and share experiences and knowledge and pain and frustration as well as the joy with the online RA community. I’ve both received and given support, and I’m grateful for the opportunity to do both.

So do I think I’m narcissistic or lazy? Do I think our Grandmothers were somehow stronger? No and no. We are a product of our upbringing and the society we live in and, thankfully in this case the rules have changed. And I definitely think that’s for the better.

With reference and thanks to ‘The Rheumatogist’ article A Short History Of Rheumatoid Arthritis Therapeutics by Simon M Helfgott MD for some of the historical information included here, any errors are wholly mine.

Trying to catch the rain….

Posted on by SingleRheum

This may start by sounding a bit egocentric, but sometimes I’m fascinated by the way my mind works! I mean the underlying subconscious thoughts we have, without any kind of input from our conscious self.  Just now and again I catch myself doing something and I stop and think why? And then I realise the why and gently correct myself. 

I guess it’s a technique I picked up from my CBT course last year, not chastising myself for having thoughts that are unhelpful or incorrect, but gently addressing them and turning them round, hopefully learning as I go. 

It’s happened this morning with something I posted in a closed group on facebook, I’ve pasted it exactly below…

Just wanted to share a positive day for a change 🙂
Finally finished the to do list I started about two months ago, including sorting address changes, closing a couple of accounts and filing a tax return for last year. 
Huge sense of relief from sorting stuff, I suffer with anxiety and paperwork kicks it off, so I’m really proud of myself for doing this today!

I shared this for two reasons, mainly because I do feel proud of achieving this, and also because I thought it might help someone else who has similar issues.  I received some lovely responses, saying what an achievement it was, and that I’d done really well to tackle it.  Then ‘it’ occurred to me.

Why had I shared this in closed groups but not on my own timeline? Let’s be honest, we all like to share our achievements with our friends and family, it’s a lot of what Facebook is.  So why not this?

I realised almost as soon as I’d asked myself the question what the answer was – sharing this as an achievement meant sharing that I find something as simple as sorting paperwork a struggle. And for me that’s quite a big admission, a weakness if you will.

I’m someone who had identified myself very closely with my work for a long time, and work meant budgets, spreadsheets, contracts, project management, business analysis, strategic planning and problem solving.  How do I then turn round and admit my brain just doesn’t work in the same way anymore?

Since my RA/Fibromyalgia symptoms started I’ve been increasingly suffering with ‘brain fog’ – a recognised term amongst those with chronic illness.  It’s like trying to catch a handful of rain, little drops make my grip but the rest eludes my grasp. Words dissappear from my mind at the precise second I want to speak them.  Memory jumps, so I can lose track completely mid sentence. 

It makes trying to deal with anything that requires concentration difficult.  And once it becomes difficult I become anxious.  And the anxiety affects concentration.  You can see where this leads…..!! Paperwork is bad, having to make phone calls related to it is nigh on impossible. 

So I procrastinate, I make lists, I shuffle them around. I move papers from one room to another.  I sort them into order, then I sort them again.  Anything but sit down and deal.  And suddenly two or three months have slipped by and I’m annoyed with myself for not getting things done, but no closer to actually doing. 

What changed yesterday? In simple terms I had a less ‘foggy’ day, the fatigue wasn’t as heavy as usual, the pain was lower for a few hours.  So I used the time, and I’m really glad I did.  It’s like a weight has been lifted, I tend to turn the things I put off into mountains to climb, when in fact a couple of hours with a coffee and the laptop and I was slowly but surely caught up. 

So, going back to my starting point here, I have been kind to myself this morning.  Yes I did well yesterday, and I should feel proud.  And that means feeling proud ‘out here in the real world’,  where if I’m honest no one who matters is going to think any less of me, and anyone who has suffered with brain fog &/or anxiety will understand completely. 

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Cyberhugs are Magic….

Posted on by SingleRheum

A friend with RA & Fibromyalgia messaged me this week to say that although she was at home with her loving family, she felt very tearful and alone.

I started to message her a response, and then realised this sense of distance, of separateness, is only something I’ve really noticed since being diagnosed with and talking to people with a chronic illness.

So why is being Chronically Ill the loneliest thing in the world sometimes?  It’s certainly no reflection on anyone’s company, I suspect it’s because we can be talking and laughing,  but behind that we are constantly hurting, a never ceasing reminder we’re not the same. We can’t just go on a trip or sit on a stool or wander into the shops. Or even have a simple glass of wine.  It’s tough feeling different, so sometimes we do feel completely disconnected from those around us.

I’m so grateful that I was diagnosed with a chronic illness in the days of the information super highway, because with it those of us who feel we are alone actually never are.  The isolation is almost immediately eradicated by typing a few words and pressing enter.

Within seconds I can be chatting via IM to friends in the UK, US, Canada and beyond.  We can, thanks to the magic of the Internet share thoughts, feelings  photos, hopes, dreams and fears.  And amazingly lovely, kind, generous people who absolutely get it respond.  A cyber hug should never be devalued.

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I’m proud to say I’m a small part of the RA community on Twitter. I am honoured to belong to a few groups that will never show up on my Facebook feed because they are private.  They are ‘safe’ & loving places to chat with others, compare symptoms, vent, laugh and cry about the daily frustrations of chronic pain, ever changing meds and the annoying variance in advice given by consultants who are supposedly all experts in the same field.

So my immediate support network is made up of my family, my wonderful ‘local’ friends, and a number of very good online friends who I just haven’t met yet.  They are all equally important, when I need to reach out, a quick pm or tweet or post and my RA family are there.  I’m incredibly grateful for this, because I think our pain separates us somewhat from the ‘norm’.

We live within our minds a lot of the time because we have to. 
We lie awake a lot because we have to.
We live slower because we have to. 
We appreciate the small stuff more. 
We become more observant.
We become more self aware.

And having given this some thought, I believe that as a consequence of these gradual changes we are more self intuitive, so we notice this disconnection that we would never have seen before. It would have been filled up with the busy and the clutter of ‘normal’ lives being lived.

The media makes headlines of how much harder it is to be alone at this place in time, something that is often criticised as overload.  And for many running between family, work, friends, parents, school etc there is little space for genuine alone time, quiet contemplation of our place in the world.

But for those of us who spend days in bed, hour on hour alone with pain and fatigue, those who, like me, see 3am far too often (and not for party reasons), there are endless aeons of time to question our value, our worth, our place in this world that measures life and success by income and productivity.

So I am thankful for the wizardry of Sir Tim Berners-Lee  & Co, who probably would never have forseen that their Internet would allow those who are vulnerable, and at most risk of becoming disconnected from the world, to not only participate but to form very real and solid friendships with strangers, bound by chronic illness.  And that truly is magic.

Falling into Fall…..

Posted on by SingleRheum

Where to start? I’ve not posted in a few weeks, partly because of moving into my own place at last ☺ but also because I’ve been sliding into a dark place mentally.  It’s kind of ironic to think you’ve hit the bottom then find actually there’s a way further to fall. 

So here I am, I promised myself when I started this blog I would always be honest, and being an advocate of openness about mental health it would be hypocritical to hide my own black spaces.  This is tough both to put out there, and to put into words, but bear with me…..

I think most people with chronic illness are probably aware of the pain cycle, but in it’s simplest terms….

(pain = low mood = depression =  increased pain = lack sleep = fatigue = low mood = pain)

…. our thoughts and feelings can very much affect how we feel physically, and vice versa. 

These happen in no particular order, but each symptom impacts the next, so the pain felt increases, and the mood lowers further.  This is not to say for a moment the pain is not real, but that our perception of its impact on our lives affects it’s actual impact. 

I had high hopes (perhaps too high) that once I’d moved into my new place I would suddenly start to feel better, logic would certainly dictate that being homeless was a stressor, which has been removed.  Instead, I’ve been almost free-falling.  Thankfully I’ve learnt to recognise over the past three years or so when my mood is dipping, and after a bad anxiety attack yesterday, (and some prompting from my online RA family – thank you squeakers) I made an emergency appointment with my lovely GP this evening. 

“I don’t know how to do this anymore” were my first words to her.  Thankfully she wasn’t phased by this, she knows me pretty well.  I had just reached a very dark place where all I could see is pain and exhaustion forever, and  I don’t know how to live with that – thinking about it now I doubt anyone could, that’s a pretty bleak outlook.  Fortunately somewhere deep inside I am fully aware that depression is a huge LIAR. 

So next steps…  Improve mood, to improve sleep, to improve energy, to improve mood….  You get the picture. Doesn’t it sound easy, especially as my condition causes fatigue!  This is going to mean a change in anti depressant as these are no longer working for me, and this indicates a few weeks of me being a basket case, but I know it will pass.  I ask forgiveness in advance if you meet this slightly deranged me 😈

The pain will hopefully be dealt with at least in part by my rheumatologist next week, I strongly suspect I have fibromyalgia as well as RA, but that will be diagnosed or not and treated as well as we can. 

I have so many medical appointments over the next month it’s crazy, between the GP, rheumatologist, hand physio, general physio, hydrotherapy, musculoskeletal physio, blood tests, and pain management psychologist I’m busy! Yet I will be making a call tomorrow to add on one more, to access some talking therapy (CBT) so I’m doing all I can to support my return to a strong place mentally and physically in time.  I have nothing but praise for our fabulous NHS, I’m so grateful for the very thorough support.

As an aside tonight I have done something I’d not realised I’d stopped doing, and that’s listen to music. I don’t think I’ve put a CD on since June, which is really unusual for me, music has always been so important to me. I’ve been digging through my collection, hitting the volume up and simply listening, after about three hours of some of my favourite chilled tunes I’m feeling almost purged, though I suspect admitting I need help has helped hugely. 

Please, if you are reading this and feel in any way you recognise yourself, reach out, help is there.

Love & light as always 💙

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Failure is a State of Mind

Posted on by SingleRheum

I’ve just been scrolling through one of the Rheumatoid Arthritis forums,  and I stopped to very gently comment and support a fellow poster because she felt she was a failure.  Her exact words were “since I’ve failed Humira and Enbrel and methotrexate..”

Of course she isn’t a failure.  It is no more her fault that those drugs didn’t work than it would be the engines fault for not working because the wrong type of fuel was used. 

I then realised that I’d said in my last blog that I felt like I’d failed.  Hmmmm! It’s a fascinating choice of word to use, and I suspect both this lady and I did it completely subconsciously. 

I just checked the Oxford English (my go to for definitions),  and it says “Lack of success”,  “the action or state of not functioning” or “A lack or deficiency of a desirable quality”.  It is clear that none of these apply to us personally, either to her or me.  It could be said that the drugs she has been given failed, that would be fair, but in no way that she had.

In my case I used the term in my last blog, Fighting the Thief that is RA, to describe how I felt I’d failed at losing my home through/to this illness.  A follower very kindly immediately commented that I hadn’t failed, but it took me a little thought to agree.

In very brief terms I started feeling ill last September, obvious symptoms started in November, I was diagnosed in early March and haven’t been well enough to work since the end of March.  This unfortunately meant no income, without income I can’t pay rent.  So what in that makes me think I’ve failed?

I’ve given this some thought today, and, rightly or wrongly, for me I think it comes down to self worth and perception.  I’ve worked hard all my life, I enjoy nice things, I’m in my 40’s and I feel that invisible societal pressure to live a certain way.  To have the house and the job and the car etc.  I’ve certainly identified very clearly with my work persona,  and measured myself against that identity. 

I’m currently signed off sick, so that has been lost to me, albeit hopefully temporarily.  The rest is ‘vanishing’ on Monday when I leave my house for emergency accommodation (and my stuff disappears into storage), of course I feel like a failure.  But on reflection that says far more about my values, and perhaps opens a window I’m not that keen to look through.  I don’t think I’m shallow, and I would certainly never judge anyone I know by income or status symbols, so why am I so hard on myself?

Why are we all so hard on ourselves? I don’t have the answer, perhaps psychology does.  I do know that in general we prop friends up but knock ourselves down, and that’s not helpful or healthy.  So I’ve made a promise to myself as I’ve written this tonight, simply to try to be as kind to myself as I would be to others.  I sincerely hope you feel able to do the same.

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