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 🕉️💙

Friendship & Chronic Life 

Previously published through Creaky Joints 

I was mentally restored by spending a few hours with two close friends last night. I’d had a stressful few days health wise which was exacerbated by an “unhelpful” medical appointment, leaving me spinning. I was off kilter, out of sorts, upset, angry, anxious, emotional and irrational. Yes, all in a couple of days! 

By the time I came home from a glass of wine, a lovely meal and most importantly the company of S&S I was feeling calm, centred, strong, rational and buzzing with ideas to resolve my problem. I feel this is the most beautiful thing good friends provide, they love you and fill you with energy. 

To me friendships are the most important and honest relationships we ever have. Family is wonderful when it works, but we all know that you can’t choose your relations! For want of a better word ‘mates’ or companions are fabulous and great for an afternoon of chat but not necessarily for baring your soul. Marriage has its own complications!

Yet making friends is quite a random process really, we meet someone, perhaps initially think they are interesting or kind or share a common ground, and from that somehow evolve into this incredibly trusting symbiosis. 

We aren’t consciously aware of doing so, but we must make a lot of tiny judgements about people who become our friends in the early days of knowing them. The dictionary defines a friend as ‘a person with whom one has a bond of mutual affection’ but I feel the word symbiosis comes closer – ‘a mutually beneficial relationship between different people’.

Initially that sounds a little formal, but add in the ‘mutual affection’ of friends and you have a beautiful symbiotic relationship. Yes, it’s about give and take, but of the intangible kind. You don’t look at a stranger and think they’ll be supportive at 3am when the dog is sick, or decide they’d be a great hospital visitor. You can’t tell at first that this person will be the one to make you laugh until you cry when you miss the train or forgot your in laws are coming for dinner. 

Keeping friendships going when you have a chronic condition can be tough, and making new friends can be harder, especially for those of us with a chronic illness but in my book it’s well worth the investment of spoons.
I’m blessed and I know it. I have a few close girlfriends who I adore. I’ve collected them over the years from various places, and they all have one thing in common. 

They didn’t run. They didn’t decide I was too sick or too needy or too boring or unreliable once I became ill. They don’t complain when I cancel last minute, they just reschedule. They post chocolates through my door at random times. They answer messages at night when I haven’t got the energy to chat but need to sense check my thinking about how ill I’m feeling or if I’m a little low. They’ve even cancelled work to sit with me on bad days.  They arrange a lunch with me for their birthday because they know I won’t make it out at night for drinks. 

They are also incredibly honest, and will happily tell me I’m being a muppet if needed! But most of all they lift me. They help me be the best version of who I can be. Their faith in me reflects my faith in them. I honestly don’t know what I’d do without these beautiful strong, intelligent women in my life, and I’m blessed that I don’t need to find out. 

I sadly all to often see people, chronically ill people, those with RA and Fibromyalgia and ME and MS saying just how lonely and  isolated they’ve become, particularly for those who’ve had to give up working. They’ve almost lost contact with the outside world, friends have drifted away following repeat cancellations, people stop asking them out because they can’t guarantee being there. 

Or they’ve fallen out with friends over well meaning but ill-thought advice. It’s difficult to remember people are only being kind, especially when you’re in a lot of pain and then you don’t feel friends understand so sadly all too often it creates a space between them that neither knows how to fill. 

So what have I done differently? I’m not sure I have a magic solution. I’ve perhaps just been lucky enough to make friends with some amazing ladies. I’ve always been open and honest with them, especially about my illness and how I feel. I think in some ways my blog has helped, they can read what I’m going through without it needing to be the topic of every conversation. 

I also think it’s important to remember that friendship, just like any other relationship takes work. I realised in January I hadn’t seen two friends in far too long, so I messaged them both and said OK, lunch when? Saw one last week, will see the other next week. Make that call, keep in touch. 

I don’t mean it should feel unnatural or be an effort, but that it’s important we put in as much love and energy as we get out. It would be horrid to think after recharging me last night that my friends went home drained, but it’s a reciprocal process, we chat, we laugh, we vent, we eat and we somehow make sure we each share what we need. It’s exactly the same with my other friends. You have to really be there and you have to actively listen (call it mindful friendship time!) to nsure they know they are special and they are loved. 

The payback is priceless, you feel special and loved too 💙

Medical Roller-coaster!

Where to start….! 

It’s been a bit of a medical and emotional  roller coaster the last few weeks, with lots of different issues and when your medical needs aren’t simple something most people take for granted like <GP = Answers = Meds> becomes a dim and distant nostalgia. 

To be honest this is probably more of an update post than anything, but it hopefully explains why I’ve been a bit quiet with regards to blogging and my Facebook page, my focus out of necessity had to turn inward. And of course the stress has affected my RA and Fibromyalgia, as well as the ME/CFS so there’s been a lot of Fatigue which just shuts me down. 

Now the worry has lessened I’m feeling a little more alert, which is always welcome. So hopefully this will be fairly lucid. Essentially three key things have been going on, a rheumatologist appointment has led to some initially surprising decisions, there have been serious concerns about my lungs and I’ve had a plethora of ongoing joint problems that I’m just kinda fed up with. 

You may recall I started Humira, my fifth RA med and my first biologic back in September. Unfortunately it did absolutely nothing for me, and in fact my DAS score increased between November and February. My rheumy has decided to stop treating my RA for six months, so a review is planned at that point though obviously if anything horrid occurs in the meantime we can reassess. My initial response was “What?!!” but having discussed this in depth with my locum GP I’m now feeling much easier about her approach. Of course I have RA, there’s no question about that, I’m RF+ and AntiCCP+ and inflammation has shown up along with raised CRP and ESR levels. However recently although I definitely still have RA pain, particularly in my hands and feet my bloods are low and there’s very little sign of synovitis (swelling). 

So my rheumy wants to try a different approach, rather than just adding another biologic which are very strong meds she wants to focus on treating my Fibromyalgia to see if that helps narrow down what’s actually causing the majority of my pain. Whilst I am concerned about being off RA meds for this period I understand her rationale, and my GP and I will be paying close attention to my symptoms during this period. So I’ve started a Fibromyalgia med, Lyrica (Pregablin) which will take a few weeks to kick in, and we’re back to to the very familiar wait and see. 

My lungs have turned into an “interesting mystery” (quoting the doc), I’ll try and keep a very long story as short as possible, beginning of October I started a dry cough. When this hadn’t gone by December my GP blasted me with antibiotics just in case and gave me a steroid inhaler. This stopped the cough, but when I tried to stop using it twice daily in January the cough was immediately back. A lung xray taken in December showed some chronic scarring, which hadn’t been there last September. This caused me to thinking I had some very serious problems, especially as since Christmas I have been steadily getting more breathless. 

An attempt at a Spirometry Test was a bit of a failure as I couldn’t breathe well enough to register results. My Locum GP has been absolutely amazing, I had about 45 minutes with her on Thursday last week, then over an hour on Friday! She, my rheumy and my GP who is working from home (back operation) have all checked the xrays and they don’t feel there is any cause for concern which is a huge relief. However my breathlessness is ridiculous, getting up and making a cup of coffee leaves me struggling. So we’ve upped the steroid inhaler dose, and I have a ventolin inhaler to use if needed. 

Next week I have oxygen sats test booked as they looked borderline low last week, and the week after I have a repeat spirometry and an ECG – we are basically working to rule things in or out by process of elimination. It’s a slow process but I’m feeling totally reassured, heard, and supported which as anyone who deals with chronic illness knows makes a massive difference to our sense of well-being. 

So that’s where I am to date, less worried than I was and still putting one foot in front of the other, albeit very slowly! The joint issues may or may not be RA, my left shoulder is probably OA as no inflammation shows under ultrasound, my left hip likely bursitis, my knees which have been dreadful seem to be tendon problems, my feet are waiting a podiatrist appointment, I’ve had one through for orthotics. I’m getting a new referral to physio, and I’m chasing an appointment with my pain clinic consultant regarding next steps for my back. Oh and we’re booking an xray of my cervical spine as I’m in pain and losing movement. 

And what do I say if people ask? Yeah, I’m fine thanks! If I started listing this lot they’d be asleep. What have I learnt in the past few weeks? A couple of important things:

  • One is not to panic until someone really qualified tells you to
  • Two is not to assume every ache and pain that arises is RA – it’s actually important to discuss any new symptoms with your GP
  • Three is to remember that we are at higher risk of heart and lung disease as RA patients and it’s really important we look after ourselves as best we can

I’ve completely changed my diet the past few weeks, incorporating much healthier foods and ditching nearly all processed sugar, and both my Diverticulitis and my scales have appreciated the change 🙂 

Namaste my lovelies, stay as well as you can 🕉️ 💙

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 

Finding Balance 

​Yesterday I cried and wept, illness taking friends is so bleak 

Today I (chair) danced and sang with friends who filled the room with life
Yesterday was for death and dying
Today was for love and joy

Balance is so important. Anyone with a chronic illness sees too much darkness. We lose time, we lose careers, and sadly sometimes we lose friends.

There are those who might say that if we’re singing and laughing then we can’t be that ill, or we exaggerate the pain. There are those who would say if we can do this today we should be able to do it again tomorrow.

They will never understand the joy of grabbing a few hours in the sun when the rest of our time is darkness. And I hope they never do. It’s absolutely necessary for our mental health as well as physical that now and again we simply say FURA!!

Spending time with people we love whose company delights us, and recharging our joy in living is probably the most important thing we can do for ourselves. No, it’s not easy. Yes, we’ll pay for it afterwards, often very painfully. But when you spend many days alone and hurting so bad you don’t actually want to even speak to anyone, dipping our toes for a time into positive, loving energy is truly restoring.

It’s very easy, especially on days like yesterday to focus on the dark, when someone passes so young and has the same condition you do you are frighteningly aware of your own mortality. It was coincidence that lead to this ‘sad day, happy day’ weekend, today being birthday drinks with lovely people, but it made me feel blessed.

So I believe that loss, as awful as it is, also acts as a reminder that we are still alive. And that’s so incredibly important. See that movie, kiss that boy, hug your children, visit your family, phone your friends, tell them you love them. Not in morbid fear, but in sheer joy that we live another day. Think of those we’ve lost, and rejoice that they were in our lives, celebrate how very fortunate we were to know them.

I’ve always loved this poem, it reminds me of those that have gone on, and how very wonderful it was that I had them in my life, however briefly.  Namaste 💙


She is gone


You can shed tears that she is gone
or you can smile because she has lived.

You can close your eyes and pray that she’ll come back
or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone
or you can cherish her memory and let it live on.

You can cry and close your mind,
be empty and turn your back
or you can do what she’d want:
smile, open your eyes, love and go on.


David Harkins, © 1981

#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 🙂

    When less becomes more

    I realised this week that I’ve been blogging about RD for over a year! So much has happened in that time, the blog I wrote this week last year, Living in Limbo, was about finding myself homeless, things were certainly very up in the air and nothing felt solid or stable.

    I’m very grateful to have had some amazing support since then, I’m settled in my little bungalow with my cats and feel on a much more even keel.  Constant change is unsettling, especially when it’s not because of choices we’ve made.

    I’d say my key word for the past twelve months has been ‘acceptance’.  It’s been a long process but it’s definitely the fulcrum around which my improving mental health resolves… I can feel a whole separate blog there 🙂

    It’s often the simple things that can resonate with us the most.  A conversation with my psychotherapist a few months ago is a great example, I’d been telling her how I kept looking ahead and just seeing no end, no way out of feeling ill and frustrated and trapped and out of control.  She said

    ‘everything changes – from your pain levels to the weather’

    and although it didn’t help immediately as I was having a low day it stuck in my mind, and she’s absolutely right. 

    Things do change, they will change again, the trick I’ve since found is to try to live more in the moment, enjoy each hour, each day, each small success – looking ahead is actually counter productive, especially when it feels bleak.

    Depression is horrid, I’ve had it for over four years now, and of course it’s often common for people to start suffering post diagnosis, which is hardly surprising. But I honestly believe with a combination of meds and talking therapies it’s absolutely possible to enjoy better days!

    The second simple thing that resonated was even more basic, but I strongly believe it’s worth sharing. 

    Change that ‘why me? ‘ to ‘why not me?’

    I know it sounds really simplistic but just churn it over for a while. Think about what it actually means.  “Why me” implies some cosmic force has said ahh yes you, you need RD! Isn’t it much more likely that it is just down to a random combination of genetics and environment? The simple fact is that it’s  not personal!

    RA has literally turned my life upside down this past year, I first lost my health, then consequently my home, my job, etc etc BUT….  It has over the same period made me completely reassess my priorities, my way of life, and I’m now starting to work out what it is I really want. 

    I’m not there yet and wouldn’t pretend to be, but boy it feels good to have had the breathing space.  I’ve been forced to step off the treadmill, to stop, take my time, breathe! And the ‘worst’ happened and you know what? Not only have I survived but there is still joy in my life, and in being alive, I’ve just have to look a little harder and in different places. Meditation has helped hugely. I’m more grounded, I’m more peaceful, my life is simpler and calmer, and this enables me to focus on self care and my hope that I will be able to return to some kind of contributing employment in the future.

    Yes, of course RA limits what I can do and when – it probably always will, but I will not let it limit who I want to be.  You too will find a way, I promise 💙

    image

    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. 

    image

    Cyberhugs are Magic….

    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.

    image

    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.