Acceptance is….

I was asked a question recently by a newly diagnosed young lady in her early twenties. She wanted to know how to find a way of living with RA – she was already in a lot of pain and her RA was quite severe which had her worried about her future. I was really touched that she felt able to ask me, and I was pondering what to say when it hit me – how blessed was I that RA didn’t raise its head until I was in my forties! I can’t even imagine how horrid it would have been to have found myself in these shoes at a younger age, when you’re still finding out who you are, what you think and where you want to be (Not saying I have those down now, but I worry about them much less!).

My initial thoughts were around Acceptance, as it’s been the key for me in finding a way to live alongside my illness. But how do you explain that to someone young and newly diagnosed? Someone who is upset, scared, angry and confused. “Just accept it, you’ll be fine” is not going to cut the mustard. So this is a much longer (and more edited) version of my reply to her, which I really hope might help not just the young and newly diagnosed but the older (!) ones amongst us finding chronic life the emotional as well as physical rollercoaster it often is. So, Acceptance.

Where to start? Meaning? Let’s give this some context. Chambers English says to accept in this sense is to tolerate, to take on board. Not exactly cheering words. I know people often see acceptance as giving in or giving up, and it’s certainly not that for me. Acceptance doesn’t mean stopping researching treatment options, chasing doctors or not eating healthily. Let me digress for a moment – often in chronic life Elisabeth Kubler-Ross’ seven stages of grief are referred to. Originally published in her book ‘On Death and Dying’ it was soon realised that it’s a really useful tool for understanding grief in any form, including grief for what and who we were after significant life changes. Diagnosis with a chronic condition certainly fits into that category. It helps us validate what we’re feeling as well as letting us know we’re not crazy, and we’re not alone.

The stages are usually described as Shock or Disbelief, Denial, Anger, Bargaining, Guilt, Depression and Acceptance. You can see a good explanation of those stages here, but I will just note that these are not linear, it’s common to jump back and forth between all of them, we process these in our own time. So whilst Acceptance is listed last, it doesn’t mean you have to cycle through the others first, although in all honesty it’s likely you will. It’s perfectly possible to go from depression to anger to bargaining and back to anger again, and it’s likely you’ll do it more than once. And that’s absolutely fine; there is no “right way” to grieve. Be kind to yourself, this is a lot to deal with.

It’s often a long road and I certainly didn’t get here overnight. Believe me I’ve ranted, railed, been depressed, had severe anxiety attacks, not wanted to go on, screamed why me – the whole box of tricks. I’m sure this shows in my earlier blogs! Acceptance is a tough thing to do with a chronic illness, but it’s such an important step, as it can bring us to a place of peace with our illness. Anger in particular is very wearing to carry daily, and hurts us emotionally.

You’ll need to find your own path to peace, no-one can do it for you. For me it’s been psychotherapy, leading to meditation and spirituality, alongside antidepressants and some great support from friends. For others it’s religion, counselling, psychology, support groups, medication, and sometimes just having a good scream! All of these are great tools. But I promise you too can make your peace with this.

Acceptance – to tolerate? So, eventually I’m back on track! Toleration suggests a kind of grudging version of putting up with, like your illness is an albatross around your neck. For me it’s much more profound and much simpler. Acceptance means non judgement. It means I stop attaching emotions to my illness. I accept it just is. Like a table or a chair, it exists, but I don’t have to feel anything about it. It’s not evil or bad or personal, and it’s not something I need to fight with or be angry at. Who has the energy for that?! Using mindfulness has made me much more aware of what I’m thinking, and if I find my thoughts are drifting towards anger or guilt I just return to my breath, and I remind myself they’re simply not helpful.

Acceptance takes work, it takes practice. It’s not easy, it means changing the way we think. Of course chronic illness has had a massive impact on my life, there are many things I’ve lost, so it’s important we choose where we focus. I’m fortunate; there are also so many things I’ve gained, including a fabulous support community across social media. I choose daily to focus on the good.

We all know things will change, chronic life throws us new symptoms and challenges frequently and I’ve found that if I try to accept and roll with these rather than fight them my life becomes calmer. Does it work every hour of every day? Nope, I still have anxiety triggers and a recent new diagnosis had me reeling for a few days. But previously that would have sent me down the rabbit hole for weeks if not months, so I call that a win.

Life is precious and there are no guarantees for anyone, so certainly for me the best thing to do is enjoy every moment. Really enjoy it. Even on the worst of days we have choices about what we focus on and how we think. So on my less easy days I’m really grateful that friends drop shopping off and I have a warm bed. On better days just sitting outside and feeling the sun on my face or the breeze on my skin reminds me I’m alive, and I make a conscious choice to be happy.

 

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Love Is All

A very beautiful & treasured friend of mine has lost her husband suddenly & so unexpectedly. I am stunned, and I am so sorry for her and her family’s heartbreaking loss.

I just wanted to take a moment to say please hold your loved ones close. Then hold them closer.

Make the words I love you the most common ones you use, and mean it. It is not a cliché to say not a single one of us are guaranteed tomorrow.

Make your loved ones your only priority. Forget the extra shift at work, it’s so damned unimportant. Forget who put the trash out last, who cares? Hold hands, dance together, sing together, scream together, spend time with each other.

Talk about inconsequential things whilst looking at the night sky, talk about the important stuff whilst looking into their eyes. Smile in the rain, laugh in the face of storms. Time is the most precious gift we ever give to others, and it’s so fleeting.

Make your moments count, fill them with laughter, make memories. Remember this means all of those you love, not only partners and children and parents, but the family we choose for ourselves, our friends.

Don’t put off that lunch date, or keep forgetting to make that call while time slips through your hands like water. Love with all of your heart as fiercely and as loudly as you can, because when it comes down to what’s real it’s all that matters.

Love is everything. Namaste 💙

Being Positive? Stuff it! 

I’ve been thinking about language and the power of words. Mostly about the words positive & negative which crop up lots on chronic health forums. And you know what? I really dislike them. It’s the conversational equivalent of black and white, and the world just isn’t like that. 

They also imply that we choose to be positive or negative, and that just by saying “today I will be” some magic happens and we become one or other. Simply not true, if only it was that easy. 

I honestly don’t believe people are one or the other, I think we’re often both with varied shades of grey in between. And that’s fine. It’s perfectly normal to feel sad because the budgie died but happy because it’s not raining. Life does that. It’s how we cope with these moments and move on from them that define us. 

Trying to be positive is a route to failure. In the same way that trying to be negative is. Because they both focus on ‘trying’, and that’s not authentic. Either is also incredibly draining, both for ourselves and those around us. Spend half an hour with someone who constantly complains about the raw deal life has dealt them and you’ll come away drained. Spend the same amount of time with someone who is forcing themselves to be positive and look on the bright side and it’s just as draining. 

This is because they’re counting on your responses to feed their energy. Unknowing of what they’re doing they slowly bleed you dry. 

Answer? Stop ‘trying’ and just be. Stop, take a look around you, the world is a beautiful place, full of wonder. If you’ve forgotten how spend half an hour with a young child, they’ll show you the magic of sunshine and trees and dogs and laughter. 

And among these shades of grey is where you find happy. Where you’re in pain and can’t move but the cat comes for a cuddle. When your energy is so low you can’t get dressed so your friend comes to you for a coffee instead. Sunsets, birdsong, a light breeze, blooming flowers, scented candles, decent music, great coffee. All things we can notice and enjoy every single day. 

So put aside the whole +/- mindset, it’s fake and unhelpful. If you’ve ever had someone cheerily say to you “remember to stay positive” you know just how unhelpful. Instead allow yourself to feel happy whenever you can instead. Right now I’m in bloody agony, my fibro is flaring and even my skin hurts. But I can still be happy, I have TV to distract me, a comfy sofa and a snuggly blanket. And one of the cats is snoring bless her! 

On balance life is good. Don’t waste it reaching for how society thinks you should be, don’t let your illness live it for you, and make sure you constantly look for the small stuff, see the magic! 

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 🙂