Somewhere to Retreat…

Hi there, apologies it’s been so long, between one thing & another I’ve struggled to find find the motivation to blog recently, mostly energy & concentration levels low due to ME, plus RA hitting my hips – you know the drill. But…. I wanted to post something about my most favourite place to be (apart from my sofa), & a tweet certainly wasn’t going to cover it. I suddenly realised I had something I wanted to say, so back to my blog at last!

Where to start? The short version is that my lovely friend Ian (pictured below), the owner of my local bar – The Retreat– celebrated 30 years in business this weekend, which is frankly amazing in today’s economy, & mostly down to the fact that they’ve consistently provided us with excellent food & drink, amazing staff & service & so much fun. Exactly what you want from your local, which coincidentally is 250 years old this year! 😊

I turned eighteen in 1988 which was the year The Retreat opened, and yes, I’ve been using it fairly regularly ever since! I’m still slightly stunned thirty years have actually gone by & I’m not completely sure where they went! I’m still only 27, right? 😁

Anyways… Why I am writing this here? Because particularly since I became chronically ill this place has been a literal as well as metaphorical lifeline for me, and it’s a massively important part of my support network, I’d go stir crazy without it.

It’s somewhere I try & visit two or three times a week depending on how I’m feeling. It’s somewhere that as a lone female & a disabled person I feel completely safe. Better than that, I feel loved. I get table service & have my own personal cappuccino mug 😍

Most of my friend network is based from here, The Retreat has always attracted a wonderfully eclectic crowd of people as regulars & long may this continue. Ian also employs some truly fabulous staff & I love them all dearly, they’re family.

Whether I drop in early lunchtime or later afternoon there is never not someone I can chat to. Sometimes after two or three days in bed you just need human contact, and this place is it for me, it always lifts me.

Because of meds it’s very rare I have alcohol these days, I haven’t drunk “properly” for over three years, but I’m still made totally welcome for my coffees or soft drinks. My wonderful GP is well aware I use the place & often checks in with me on appointments that I’m still getting out at least a couple of times a week – we both know how important that is for my mental health, it’s way too easy to become isolated when disabled.

Any good pub or bar is always a community hub, & The Retreat certainly fills that role beautifully, whether you need help with the crossword or to find a plumber this is definitely the place to be.

So, I absolutely wanted to be present as much as possible this weekend, and I managed both Saturday & Sunday afternoons. Evenings are unfortunately a bit beyond me. But I’ve spent time with some of my favourite people in my favourite place, & that’s what was important to me.

Have I come home and crashed? Horribly. Everything hurts, I’ve barely moved since I got home this afternoon & I’ll probably trade at least a few days for these two afternoons in a row. And you know what? It’s worth every bloody spoon I’ve used, pain included.

Because sometimes life has to be about more than illness & pacing & doctors & tests & meds. Friendships & love are so important, I treasure them & the joy they bring me.

I’ve said before this is my equivalent of the TV bar Cheers, “where everybody knows your name”. So I guess what I really want to say is not only Congratulations Ian, or “I bloody love this bar”, but mostly Thank you, for being my respite, my social life, my Retreat.

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The Mercurial Whirlwind..

*Content warning – suicide

On Monday 19th February it was eleven years since my Dad phoned me early one evening to tell me that my younger sister Mary had died. She was 35.

You hear people say things like “I knew it was bad news when the phone rang” but I genuinely went cold on the first ring – I’ve no idea how to explain it, but I swear I somehow knew it was really bad news about Mel.
Unfortunately she had ended her own life. I could speculate for hours (and did initially) on exactly why, but it serves no purpose. The simple truth is that at that moment in time she needed to stop. Undiagnosed depression certainly impacted her actions.
But that was how she ended, it wasn’t who she was. I’m not sure I have the words to capture the mercurial whirlwind that was my little sister. No one else has ever made me laugh (or cry) so hard. She was beautiful, funny, kind, generous, quixotic. She was also stubborn, defensive, argumentative and had a flash temper that raged white hot then just as quickly was gone.

She’d unexpectedly turn that megawatt smile on you and you had no choice but to grin back.

As kids we fought so much, but had each others back, always. I have loads of fabulous memories, good and bad, and that’s how it should be, saintly she wasn’t!

I remember at the time she died being unexpectedly angry with her, simply because we were supposed to grow old together. Losing her was hard, but it was almost as tough dealing with the loss of both past and future memories.

There is no-one else who remembers how to play “mummies, daddies & little darlings”, who knows how you had to step over the second floorboard from the bathroom door because it creaked so loudly, who swears she saw a ghost in our kitchen, who could play connect four for hours, who can remind me how I taught her all the basic swear words after she begged me to! Who was my partner in crime on teenage hair and makeup, and my best friend even when we ‘hated’ each other.

It’s like I lost some of the vibrancy from my past memories when she died, they’re still there, but without her to help me take them out and polish them or argue over them they’ve faded.

Of course we should also already have another eleven years of adult sisterhood to mull over. But she’ll never make a new memory in this life, as much as I carry her with me always.

There’s simply a Mel shaped hole missing from the second half of my life.

So I want to use this post to let anyone who is feeling like they want to stop know they are not alone. You are worthwhile, you are seen, you are loved. This really will pass, so please reach out for support in whatever form feels comfortable. I promise help is out there.

UK & ROI Samaritans – 116 123

USA – Lifeline Chat – 1-800-273-8255.

Australia – Lifeline – 13-11-14

Canada – The Canada Suicide Prevention Service – 1-833-456-4566

Dear Newly Diagnosed…

You obviously feel in need of support.
I do remember that feeling – that you are really struggling with the whole idea of having RA – of becoming chronically ill.

So you’ve joined a support group, seen a few posts about surgeries and disability and people trying their third biologic, now you’ve gone from slightly concerned to terrified!

It’s important I think that newbies to #chroniclife are made aware that it tends to be those with more severe symptoms who gravitate towards support groups or twitter, and stick around. It’s important we acknowledge that around 40-60% of those diagnosed with RA and treated early will likely achieve controlled remission with medication. That’s actually pretty good odds. And those people often never feel the need to look for support groups online or to stay around if they do.

So our tribe tends to be those who’ve been a bit battered, often suffering with mental as well as physical issues that ergo cause emotional as well as physical pain. It means sometimes posts and tweets can seem dark or bleak, but it also means we have a fabulous empathy with each other and are able to give outpourings of love and support and prayers whenever they are needed – we’ve been there, and many of us have come out stronger for it.

And that’s a really important thing to know – we do come out the other side. My first year with RA was dreadful, I lost my job, I was made homeless. My depression spiralled. It was a dark time, perhaps not dissimilar to where you may find yourself now, and without my online tribe (not forgetting my wonderful IRL family & friends!) I’d have collapsed. These fabulous, generous strangers kept me putting one foot in front of the other when I couldn’t see the way forward. They held up a light.

It was hard and it was sad and it was painful, I won’t pretend otherwise. Antidepressants helped, my GP helped, psychotherapy helped, group therapy helped, and very gradually my feet found new, firmer ground. On balance now I can honestly say chronic illness has brought more good into my life than bad.

The worst happened and the sun still rose and set. That’s life changing right there. Survival. Some great therapy led me to mindfulness which lead me to meditation and gratitude. Despite being ridiculously ill and in constant pain I am genuinely happier with myself than I’ve ever been in my life.

RA was the brute force needed to make me stop & smell the coffee. I know it touched me for a reason. I live more spiritually and much more slowly, I treasure my friendships, I’m more sympathetic, more patient & more kind. I’m grateful for the smallest things, a warm bed, hot coffee, a good book. I’m no longer impressed by the material, but hearing a bird sing or watching the clouds move can and frequently does fill me with with joy. My path has been irreconcilably altered by RA and I’m the better for it.

Yes I still have dark days. I’m very ill, with RA, ME, Fibro & other conditions. So I have constant pain and take a lot of meds. I’m still on antidepressants and fully expect to be for life, they boost chemicals I need to be me and I’m more than fine with that. But my darker days are just that now – days. In the past they would have been weeks or months, my coping strategies developed and yours will too.

I wanted to share this with you not because you’ll do the same or feel the same – we all walk our own path through this life. But to hopefully reassure you a little that you absolutely will find your way. Chronic illness is not an end but a shift to a new beginning, an altered life does not have to be a lesser one.

My newcomer tips?

  • Get enough rest.
  • Listen to your body, if it hurts, stop.
  • Build your pain toolkit – meds, gels, ice, heat, tens, marijuana, movies, whatever works for you.
  • Let go of worry about what others may think – it really doesn’t matter.
  • Look after you – baths, chocolate, candles, pamper yourself.
  • And always, always remember to be as kind to yourself as you would to others – we are way too hard on ourselves.
  • Practice #selfcare daily

Sending blessings, Namaste 🙏🕉️💙

Excuse me, I’m Dormant…

I sort of feel I should start by apologising for being so quiet recently, especially with blogging, but the spoons have been really low for a couple of months. I feel the balance is tipping towards more ‘bad’ days than ‘good’. I dislike using those terms as they feel like I’m judging, I’ve hit the trusty thesaurus, how do dormant days and wakeful days sound?

The definition of dormant seems particularly apt – adjective: dormant (of an animal) having normal physical functions suspended or slowed down for a period of time; in or as if in a deep sleep

That accurately sums up about 40% of my time. Maybe more. At the moment I feel like I’ve hit a medical stalemate – another great word – any position or situation in which no action can be taken or progress made.

I saw my GP (who is fab) on Friday, we ran through a few symptoms where her answers were, not unreasonably, that there’s nothing that can be done. Of course if a,b, or c get worse let her know, if not do my best to continue to live around them. She has the option to refer me back into the hospital Fatigue Management team so to keep that in mind for the future.

FYI I’m not being ignored, I have ongoing support from Thoracic (lungs), Rheumatology (joints & lungs), and Orthopaedics (spinal surgery, sciatica) as well as my GP.

But none of these stop me doing this. Sleeping for 16, 18, 20 hours at a time. I track my sleep now because I’m not sure people believe me, but I’m genuinely out for the count, I don’t wake to pee, drink or eat, and a bomb could go off without me stirring. Usually after a sleep like this I wake but can barely move, it takes everything I have to stay upright just to make a coffee and maybe toast. It’s like the worst flu feeling quadrupled. I literally stagger to the kitchen and back, almost on my knees.

And every time within two hours I’m passing out again. I use passing out deliberately because that’s exactly what it feels like, it’s almost as if I can feel my body shutting down, to quote the Borg “resistance is futile”. I spend approx two to three days a week like this.

To be clear here I’ve been diagnosed with RA, Fibromyalgia, ME/CFS, and RA-ILD (Interstitial Lung Disease). All of which will be contributing to this dreadful fatigue, though my suspicion is this is much more ME than the others. I’ve attended pain management sessions and fatigue management sessions which mostly revolve around pacing and CBT. Unfortunately as anyone with ME knows the use of CBT as a tool to improve fatigue has been totally discredited. And pacing just doesn’t work.

Pacing is actually a very simple technique. One monitors one’s activity and fatigue levels for a few weeks on a chart, then you calculate an energy ‘baseline’. So let’s say the average day allows you three hours of low activity. You plan around this and you slowly work on building up. Sadly this model assumes a number of modes of behaviour are manageble for the patient – such as getting up at the same time every day, sleeping for the requisite number of hours per night, ceasing to nap during the day, and that after sleep one feels refreshed.

None of this applies in my case. When I mentioned to the fatigue team that I can spend two or three days a week sleeping (dormant) they told me this “wasn’t usual” for ME. I thank the stars for the Internet, there is a lively community online who very quickly taught me I’m not alone, and I’m definitely not an aberration. In fact I’m fortunate, there are people with ME who’ve not left their beds for years.

I can sleep four hours or twenty, I never wake feeling refreshed. I can’t choose to not nap when I can be awake and say, reading one minute and the next it’s six hours later. Yes, my internal nap monitor is screwed too, it’s never just twenty minutes! I can’t work to a normal “sleep pattern”, when I’m dormant I not only sleep through alarms, I’ve slept through my cleaner coming and going, and a few weeks ago just crashed on the sofa whilst a friend was building me a walk in closet, thankfully he understood as his mum has ME so he finished quietly and tiptoed away. Bless him.

But I think these examples clearly show this is not down to me giving in or not trying. I don’t see anywhere to go from here clinically. So my only realistic option is to continue to flex and enjoy my Awake around my Dormant.

Yes this makes planning difficult. There are hospital appointments I’ve had to reschedule, blood tests I’ve missed. More important to my sense of engagement with life is the birthdays, the weddings, the lunches and the family events I’ve missed. It’s been a long time since I’ve felt guilty for these, I know now I have to listen to my body, but it still saddens me to have to cancel.

Is this difficult to live with? Yes of course, saying otherwise would be disingenuous. I think anyone faced with the reality of losing maybe three or four days a week, every week, for the rest of their life would be floored. I think the blessing here for me is that this hasn’t been a sudden notification, it’s happened gradually over the past few years and whilst I’ve railed and wept I’ve also become accustomed to these limitations being my life.

It’s just that this conversation on Friday finally drove home that this is here to stay. There is no magic pill or potion, therapy or faith that will make this change. Stalemate.

And so comes acceptance. So I will continue to try to see my dormant days as necessary recharging, to allow my wakeful days to happen. I will continue to try every day to find both gratitude and joy in my world. I will continue to use my toolbox containing items as random as meditation and tramadol, heating pads, mindfulness and antidepressants. And I will continue to find my joy in the smallest and often unlikeliest of places. Eyes wide open.

Namaste 🕉️

Things I wish I’d known.. 

What do I wish I had known at diagnosis? This started out as a short response to a seemingly simple question and ended up here, I guess I always figure why use ten words when you can use hundreds!

1. That there is a fantastic, amazing and committed online support community. That these strangers would become my home, my family, my friends. There is an amazing bunch of people out there, living #chroniclife just as I do, and they are all passionate about providing support, information, safe places to chat and vent, and somewhere to go at 3am when the regular world is asleep.

2. That getting the diagnosis is not the end, it’s the beginning. Just after I very first joined a wise RA’er told me that this is a marathon, not a sprint. Three years later I get it.

3. To take all the RA stuff seriously, but learn to laugh at it at the same time. It’s very easy to get bogged down under it all, so spot the funny moments and treasure them, they do help! (Getting stuck in a hotel bath springs to mind!)

4. That everyone’s RA is different. There are similarities within recognised parameters, but you may suffer some things badly and others not at all. That doesn’t make you odd or weird, we all feel this differently
5. That #selfcare is the single most important thing you’ll learn to do. You can’t pour from an empty bucket, so look after you properly, then you can be there for others. Putting even family before yourself is a mistake, I always think of the airplane oxygen rule, you first, children next.

6. That it’s perfectly possible to have even severe RA and live your life with love and joy and hope. You’ll find your way, and there are others who are here to help, always.

7. That it’s OK to scream and rant and rave and be angry too. We all do it, venting is welcome! Letting off steam occasionally is I believe an essential part of processing and accepting your diagnosis

8. That no one can tell you how a medication will work for you. Not your rheumy, not your doctor and not us. Unfortunately RA treatment is trial and error – many people hit their magic med first or second time and probably never join online groups because they don’t need them. Others will have meds fail them over and over, or provoke allergic reactions. The only way to know what will work for you is to try it with your rheumys support and guidance.

9. That you will find your way through this. You’ll learn how your RA behaves, what helps and what doesn’t, when you need to rest and when you need to work through. It’s not a quick or easy process, but I promise you will get there 💙

Reach Out – A Plea 

It’s sadly ten years ago this week I lost my younger sister Mary to suicide. I’ve written this as a plea to anyone who is feeling this low, please reach out, to someone, anyone.  You are not alone. You matter, we all matter. Please make the call that she was sadly unable to.  Namaste 🕉️

UK Samaritans is a free call on 116 123
USA Samaritans is a free call on 1 (800) 273-TALK
Australia Samaritans is a free call on 135 247 

Choosing to be happy… 

I was reading an interesting thread on twitter this morning and it emphasised something I’ve noticed online over the last few weeks. First I’ll give an example – this particular thread had asked the question of disabled people “With optimal support how different would your life be?”

The answers fell into two distinct categories, either “I’d write/study/move house/volunteer” or “I can’t imagine this / I don’t have the energy to think about this”. Now you could say perhaps some of the responders were more physically impaired by their disability, or that they deal with more debilitating symptoms. But having been noticing this for a while now I don’t believe this to be the case.

We can all choose how we think about something. And making that conscious choice has a huge effect on how we subsequently feel. Bear with me here – if you’d have told me this a few short years ago I’d probably have become defensive or angry and felt you were criticising my thought process. It’s only due to some great therapy and a lot of reading that I’ve been able to reach a point in my life where I’m thankfully able to make conscious decisions about what I think.

The impact this has had on me has been so positive. Don’t get me wrong, it’s not a cure for my depression and anxiety, I’m still taking my pills and have days where it’s darker. What it has done is given me coping techniques to deal with those days without them turning into months every time.

In simple terms only WE are responsible for what we think. Yes, that inner voice is us too. It’s our head, our thoughts, our responsibility! And we make subconscious choices about what we think, how we react to things, how we will respond. So why not make those choices concious?

Let’s use my Saturday as an example. I woke around 11am, did the usual coffee/bathroom/clothing stuff then went to meet some friends in my local for coffee. I was there for about three hours, sitting down, chatting, crosswording and laughing. Then I went home and crawled into bed, took a double shot of painkillers and didn’t move again for six hours. This is fairly standard. Activity = pain + fatigue.

I could quite justifiably feel angry about this. It’s not fair, other people don’t have to pay for socialising, why can’t my meds work, why did I get this stupid disease, why am I so useless, I’m no good to anyone, my life is crap.

It’s an easy trap to fall into, I know because I’ve been there. But it leads down a very rocky path to anger, self pity, self hatred, and a feeling of total worthlessness. We convince ourselves we have no value. And that’s a self limiting belief, because we withdraw and huddle at home feeling sorry for ourselves, which means we don’t see anyone, which means they all hate us because we’re worthless. It’s a horrible lonely and despairing place to be.

But…! We have the power to change these thoughts. One day at a time, one belief at a time. There’s no magic trick or quick fix, it takes practice, and dedication. Which to be honest are small prices to pay for feeling better about yourself, right?

So Saturday night, laid up in bed. Was I angry, sad, feeling sorry for myself? Nope, not even close. Was I slightly peeved about the pain? You bet, but that’s as far as it went.

  • Rather than being angry I could only stay out for a few hours and then had to suffer I was grateful for the lovely afternoon I’d had catching up with friends
  • Rather than thinking my life is so awful I was thanking the universe for what I had – pain relief, a warm bed, heated blanket.
  • Rather than thinking I was worthless for not spending more time with friends I acknowledged that they love me, and enjoy spending time with me. And I’m very grateful for that gift.

I think the most impactful thing I’ve learned has been to practice self-love and gratitude. Both are simple concepts. Accepting yourself, and loving the unique person you are will be the most important thing you ever do for yourself. And practising gratitude daily is such an easy habit.

Start by listing three things a day. They could be time with friends, a nice lunch, a sunny day. And some days they’ll be bed, sleep, food. But you’ll find you start appreciating the small stuff, and realising it’s really the important stuff. Ever thought about why small children are so delighted by every little thing, so quick to laugh, to smile? They have no learned pattern of negative thoughts, they literally live in the moment.

So next time you’re about to tell the world how dreadful your life is, stop for a moment and watch what you’re thinking. There’s probably a jumble of negative thoughts whirring round all reinforcing your poor opinion of your life. So acknowledge them, and then let them go. Take a minute to think of what’s good about today. Toast, pyjamas, slippers? Great, that’s a start. Aren’t you glad you have them? ☺️

Honestly, give it a try. It is possible to choose to find the joy in your life rather than focus on the pain, and the outcome is you’ll start feeling happier. That’s what I call a win. Namaste 🕉️💙

The Unspoken Death 

Heads up, this post covers suicide and may cause some distress. There are contact details for support agencies at the bottom of this page. Latest figures I could find suggest more than one in ten suicides are related to chronic illness, so this is something we really need to talk more openly about.

Suicide has sadly touched me closely as I lost my beautiful sister Mary to it nearly ten years ago. I miss her every day. But for the first time on my blog the words below are not mine.

An online RA friend posted these words in our private support group this evening, and they are powerful and moving. I have her permission to share, and she has my promise to remain anonymous.

“Today I had to do something that I never dreamed I would. I had to go to a friend’s wake. My friend had other health issues which she was dealing really well with but was diagnosed with RA a couple years ago.

Her RA was progressively getting worse, I had talked to recently and I thought I had convinced her to join our group for support. However she tragically took her own life this week.

She left a note and the main gist was that RA had turned her into a person that she didn’t like anymore. She felt like she was more of a hindrance. She did not want to go into a wheelchair. She did not want to put any pressure on anyone in her family because she felt RA was her problem to deal with. She was ashamed of the condition that her body was in. She was ashamed of the fact that she was always so tired and that she had to cancel family things because she just did not have the energy.

Attending her wake hit me hard. I think of all of us that have RA know about all of the different feelings and emotions that we go through. Everything she mentioned in that letter I have felt at some time. The reason why I brought this to our group is to show that RA is not only a physical disorder, it also affects us mentally.

RA turns your life upside-down, inside-out, and sideways. But for me this is no reason to take your life over this disease. To me that means the disease won.

I’m putting this out to the group so when you get depressed or you’re having a bad day or even having these thoughts please please reach out. Tell someone that you need help because you are in a bad spot emotionally. There will be many people that will help. I was always told when you have a problem and you share it with another person your problem is cut in half.

This is a subject that we all need to talk about. The suicide rate among chronically ill people like us is very high. Let’s not allow that statistic to continue. I can tell you from seeing it right up in my face and also seeing the grief of her children and her husband the damage done by my friend taking her life is worse than having Rheumatoid Disease.

So this has opened my eyes and I’m encouraging us all to reach out and asking people who say they are having a bad day what’s going on, and how you can help. I have been part of this group I think 3 or 4 years now. I have developed friendships with a bunch of you and I truly do care. You guys have become my family.

For those of you that are new or that sit in the background and read the posts, please introduce yourself, talk to us, let us get to know you.

Most importantly if you are having thoughts of committing self-harm or suicide please put it out there. There is always someone always online. I do not want to lose another friend because he or she thought they were all alone and the only way out was to commit suicide.”

Contact details for confidential support:

UK – The Samaritans

US – National Suicide Prevention Line

Canada – The Lifeline provides a list of contact details for individual states, a national helpline is planned for later this year

Australia – Lifeline Crisis Support & Suicide Prevention

#rablogweek 3 – Coping with Depression 

Coping with depression – How do you manage the inevitable lows of having RA? Do you view RA as being forever or do you look forward to remission? What are the best ways to cope with the depression associated with RA?

I’m choosing a Wednesday Wildcard, simply because this is a subject so close to my head and my  heart. I suffered with depression for a while before RA, but for a few months last year the whole RA ‘package’ sent me spiralling downwards again. 
One doesn’t expect to be pottering through life one minute to have everything torn away from you the next. Over a few short months I lost my health, my mobility, my career, my income, my social life, my home, my identity and my sense of who I was. 

I simply couldn’t see a way forward. I’d worked so hard to build a career and had (as I think many people do) based my sense of self on my job. I was a regional manager, I travelled and project managed, I worked a million hours a week and I was known for being organised and capable. I couldn’t see who I was without this, and worse I couldn’t find any sense of self worth, I’d lost my value. 

Add in new medications, side effects, homelessness, constant pain and incredible fatigue and you can see why things looked black. 

I’ve more than once seen people comment that a chronic illness diagnosis starts the grieving process and it’s so true, you’ve lost your ‘life’, there is no cure, you mourn what you were and focus on what you can no longer do.

You certainly go through the five stages of grief – denial, anger, bargaining, depression and acceptance – but these are not linear and we can find ourselves returning to any one of these stages at any time. 

  • Denial faded quite quickly for me, the sudden plethora of medical appointments and tests don’t allow you to ignore what’s happening 
  • Anger is one many people get stuck at. In the short term anger is useful, it makes you question and plot and plan, but over a longer period is definitely not healthy
  • Bargaining was for me a slightly weird stage, you find yourself praying to any power available, you promise to eat healthier, stop smoking, stop drinking, get more sleep – anything to take the pain away 
  • Depression is very closely linked with RA, and as too many of us know it creeps up on you then settles in 
  • Acceptance is so very important for our mental health, but it’s a hard one to do. It’s taken me some months and some fantastic therapy, but reaching this stage is incredibly freeing 

I view my RA as a lifelong condition, there is no cure and treatment may slow disease progress but it won’t make it go away. So bearing this in mind how do we cope with the depression? 

  • Medication. It’s vital to speak with your GP as soon as you realise depression is with you. Mine is incredibly supportive, and when the antidepressant I’d been on for a couple of years with good results seemed to stop working once I added RA to the mix we discussed this together and changed my medication, it’s made a world of difference 
  • Talking Therapy. I am such a passionate advocate for accessing professional mental health support. I used some NHS provision which was group therapy and a great start,  but I felt I needed more so paid privately to see a psychotherapist. She’s changed my life. It’s that big and that important. Yes I still have low days and suffer with anxiety, but I also have tools to help me through 
  • Lose the guilt. I see so many people who blame themselves for not being able to live as they were, they feel they’ve become a burden on their families and friends and are no longer worthy of being loved because they can’t cook or clean house or make the school run. This is not our fault, we didn’t ask for this, and guilt is a very destructive and pointless emotion 
  • Friends. It’s so important we make the effort to keep in touch with people. And it’s so hard because depression makes you want to shut out the world, add in fatigue and pain and it’s so very easy not to leave the house. Yes I’ve had to cancel arrangements at the last minute (more guilt) but my friends totally understand and have been amazing. 
  • Leave the house. Isolation becomes a default setting very quickly, especially if like me you can spend days in bed due to fatigue. On better days I consistently  make myself go out. Fresh air, change of scenery and being around people can make such a huge difference, you feel like you are part of the world again 
  • Hobbies keep us feeling productive and get the brain ticking over. Yes, we lose some, I adored cooking and can no longer manage it, but I’ve found others, I do crosswords, write my blog, run my Facebook RA page,  knit on days when my hands allow and have rediscovered a love of reading that I never had time for. 
  • Music! Sing, chair dance, whatever floats your boat but music can really lift your mood when nothing else will 
  • Practice Gratitude. A tip from my therapist which really works. Every night before I go to sleep I run through the things I’m grateful for that day. I found this so hard at first, I would grumpily be grateful for a warm bed and pain meds! But it was a start, and with daily practice it becomes so easy – my friend called, my cat made me laugh, it was sunny, I love my new book, my cleaner has been! You will discover more and more every day. And if on bad days it’s bed and pain meds that’s OK too 
  • Meditation has been a wonderful discovery for me. I started with simple breathing exercises shared in group therapy, found a great meditation app and hit you tube for suggestions. I could do better, on bad days I don’t always practice, but on the days I do it really lifts me 
  • Find Acceptance. It takes some soul searching and a change of thinking but it’s the most important step forward after diagnosis. If you am e constantly hating your body, your illness and what it’s taken from your life you will absolutely feel awful. It was a stupidly simple phrase that did it for me, ‘Don’t ask why me, ask why not me’ 
  • Find your tribe. There are some wonderful online support groups that offer friendship, advice, shared experiences, validation and a safe place to vent when needed! Facebook has some good ones and they are private so your friends/family won’t see your posts. I think I’d have gone crazy without my RA tribe 🙂

    Trying to catch the rain….

    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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