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Absolutely love this post from Jo, it explains very clearly and succinctly why Dr Google, when used responsibly, is a great tool for patients. 

Dr Google & The e-Patient Experince – https://jboccupationaltherapy.co.uk/dr-google-e-patient-experince/

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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 🕉️ 💙