Showing Phil Mickelson where to shove his Nine Iron and other neat tricks. 

My beautiful RA friend Billie has started blogging. Her honest, pull no punches approach is speckled with humour. Please read 😊

RA in the Raw

You’ve all seen it. TheEnbrel commercial. You know the one, where Phil trots merrily over miles of manicured golf course without a care in the world thanks to Enbrel all but curing him of his Psoriatic Arthritis! Take it from me; one wrong step over something as minor as an anthill is going to have you wanting to wrap that nine iron around ‘ol Phil’s head quicker than Tiger’s wife when she busted out his window to ‘save him’ that Thanksgiving day.

On one hand, seeing a celebrity come forward with a like-minded affliction fills us sufferers with hope. Maybe nowsomeone in the funding department will take notice of what we go through. Maybe nowreal money will go into research! But, more than likely what will happen nowis our peers will look at us and say (or think) ‘If Phil Mickelson can do it, why can’t…

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RA – My Story… 

​Talk Health, the patient voice online asked for responses to a questionnaire recently, which I duly sent in. As today is Rheumatoid Awareness Day I figured it was a good time to share my story here too.  

1. Personal details – I’m keeping those ☺️
2. Tell us about you and your condition? I’m 47, happily single and two years ago I was diagnosed with Rheumatoid Disease. Three months later I had to sign off sick from work due to daily pain and fatigue, and although I’d love to return to employment at present I consider myself medically retired. Shortly after diagnosis I started sharing my story through my blog, Singlerheum,  and have been delighted to have had over 9000 views. The online spoonie community is an amazing support network that I’m proud to be a part of. I’ve since been diagnosed with Fibromyalgia, ME/CFS, DDD and Sjorgens, all  of which are commonly linked with RD. 

3. What treatment or therapy do you use? I’m on biologic medication for my RD, plus a number of other medications daily including anti depressants, pain relief, and meds for hypertension, Factor V Leiden and IBS.

Alongside these I have found more holistic practices helpful including conscious breathing, meditation and chanting as well as an electric under blanket, heating pads,  voltarol gel and compression gloves. 

4. What impact has it made on your life?  This could be a book! In more or less the right chronological order I’ve had to face up to daily

  • constant pain
  • fatigue that knocks you off your feet
  • losing my job
  • losing my house 
  • being officially homeless for three months
  • having major anxiety attacks
  • worsening of my depression. 

Becoming physically disabled, needing crutches to walk and a mobility scooter,  a raised toilet seat, a shower chair, a bed  rail,  a raised sofa and grab rails outside my front door.  

Not being able to wash or dress myself some days, sleeping binges of up to 18 hours and conversely insomnia. Loss of an evening social life, it’s normally pyjamas by 6pm. Loss of a friend who felt I was ‘sick & needy’.  Missing friends weddings and cancelling my own birthday due to fatigue and RD flares. 

5. Is adherence (sticking to your treatment regime) a challenge? Not at all, it’s a pain, but a manageable one most days. Alarm for morning tablets,  eye drops and mouth spray. Fybogel powder drink an hour later.  Alarm for evening tablets,  night eye gel, Lax powder drink.  Alarm every two weeks for biologic injection.  

Then self managing pain meds as needed,  using Paracetamol, Tramadol, and Hydrocodone for breakthrough pain. It would be a real struggle to  manage around working or a family, but living alone means my life can be very simple, it’s become a necessity. 

6. What side effects (if any) do you have to manage? Headaches, dry skin, dry eyes and mouth,  bowel pain and issues, GERD. 

7. Are you getting enough information about the meds that you take? Yes, but mainly because I self educate. 

8. Are you looking for an improved treatment? I’m looking for a cure!  But in the meantime an effective treatment would be great, I’m on my fifth RD med with no experienced improvement so far. 

9. Do you think that the pharma industry listens to you? Honestly? I don’t think they care. I’d love to be proved wrong. Simple lack of thought given to containers and packaging alone causes millions of patients hardship just to open their meds. Certainly as both an active patient and Advocate with RD I’ve never been asked a question by the pharma industry. 

However I have recently signed up for a new med packaging trial this year, so we’ll see! 

10. How would you like to see communication with drug manufacturers improved? I don’t think there is any. Certainly here in the UK you are prescribed a med and you take it. You have no say in brand, manufacturer, packaging etc. 

I would love to see more patient friendly packaging and plain English information  leaflets. I’d love to see customer service advice lines on packaging. I’d love to see drug manufacturers with patient friendly Facebook pages to encourage open and unsolicited communication. 

11. Do you remain hopeful? Yes. Despite worsening mobility and physical health, and thanks in no small part to a fabulous GP and some great private therapy I’m working on gratitude for the good in my life and achieving peace. Acceptance of my multiple diagnosis’ has certainly gone a long way towards that. So yes, I am in pain daily, fatigued daily, limited  to what I can do by how I feel daily, but I have the support and love of friends and family as well as the online RD community and that keeps me moving forwards each day!  

Postural Hypotension

Well there’s rarely a dull day here at the moment, after lunch Tuesday with my lovely Dad I had nothing else on all week which is so welcome, my spoons were vanishing, need sleep!  Tuesday I also saw a locum GP, who was great, she listened, checked me over and we think we have a diagnosis – yes another one! 

I’d had odd very wobbly moments before, but last week they started happening every evening, sometimes twice, and I was getting quite worried. Felt like the inside of my head was spinning, usually lasting about two minutes or so. My biggest concern immediately was please don’t stop me driving, I’d be so stuck 😕

I, fortunately in a way, had one episode  Saturday evening while out with my friends, and they all said I immediately went white, not something I’d notice at home on my own. 

The doc is pretty sure it’s Postural Hypotension. Which basically means when I go from lying or sitting to standing my BP doesn’t catch up quickly enough, hence the dizziness. 

She’s asked me to take BP readings for a week am and pm, because my BP looked high in the surgery. This is a little worrying as I’m already on BP meds for Hypertension, ie high blood pressure and it looks like they may have stopped working? At least I’m being looked after. 

In the meantime I just need to take my time when getting up. Talk about feeling 90! 

Get Well Soon Doc! 

I know I’ve mentioned in blogs before that I’m extremely fortunate to have a wonderful GP, she knows me well, is incredibly supportive and I’d be lost without her. 

I had a phone call yesterday afternoon to let me know she’s gone off on long term sick with a back problem. Anyone who is chronically ill will know the immediate panic and anxiety this caused. 

Most people probably see their GP a couple of times a year if that. I probably see mine every six to eight weeks, with intervening phone calls and occasional texts if something new crops up. My medical history for the last few years is stupidly long and complex, and this is where the problems start with seeing another GP, however wonderful they are. She knows my story. 

I have RA, Fibromyalgia, Degenerative Disc Disease, IBS, hypertension, post Phlebetic Syndrome, Sjorgens Syndrome, ME/Chronic Fatigue Syndrome, Depression & Anxiety, intermittent insomnia, a Hiatus Hernia, Gastro Esophageal Reflux and am currently being treated with a steroid inhaler for a chronic cough, as well as ongoing painful bowel issues. 

My GP knows (despite all the above) that I’m not a hypochondriac and I never bother her unnecessarily. I am educated about my health and my meds, and usually know if something is wrong what it’s likely to be related to. When I go in to see her I always have a little list on my phone, we zip through it and she’s happy if I go over the set appointment time. 

The GP I’m waiting for a call back from today (possible onset of vertigo?) knows none of this. Without looking at a list they know nothing of the 18 repeat prescriptions I currently have either. 

The thought of trying to get them to focus on my immediate concern and ignore the other stuff is a  bit mind boggling, but I know this weird dizziness is not related. Then I have a ‘catch up’ appointment booked on the 18th which will be with a GP I’ve thankfully met before who seems nice. I’m just hoping she doesn’t think I’m nuts when I get my little list out – bowel pain ongoing –  meds made things worse, drops for sjorgens are helping –  can I have more please, yes I take tramadol daily, I need more of that too. Chest xray results please, if I miss a dose of my steroid inhaler this cough starts up again. Oh and by the way I need to update you from my appointment with the fatigue clinic, and my hands and back have been exceptionally painful for the past couple of months. 

Not quite so simple as simply popping in once a year when you get a virus. 

So for a multitude of reasons I’m sending healing blessings to my GP, and I very sincerely hope she’s better soon! 

WEGO Award Nomination! 

I am chuffed, delighted and honoured to have been nominated for this year’s WEGO Health Activist awards for my Blog!

When I first started this blog I was fully prepared to get half a dozen views or so, I had no idea it would turn into something nearly 7000 people from all over the world would access! 

Over the last 18 months or so I’ve published over 50 posts, and every one has led to me being genuinely touched by the comments and replies I’ve received.  Sharing my personal journey has led me to make some fabulous online friends which I’m eternally grateful for. For every time I post I see another viewpoint or hear another’s story, it’s been a two way process all the way, I love and appreciate every person who chooses to share with me in return. 

This is where I say with all honesty I am genuinely delighted to be nominated, it means the world to me, I actually cried when I received the notification. 

However if you’d like to vote (endorse) my nomination I would be very grateful! 

https://awards.wegohealth.com/nominees/12683

Weighing the risks 

Well here I am, roughly 20 months since diagnosis with RD and more or less no further forward.  Although I can now quote some really fancy medical terms! Most of my joints are now affected in some way, my mobility is very limited and the fatigue is a constant companion. Having tried all the basic DMARDs, Methotrexate (damaged liver), Sulfasalazine (no effect), Hydroxychloriquine (no effect) and Leflunomide (horrid side effects) it’s come time to move on to the biologic medication.  

My rheumatologist and I have decided to start on Humira (Adalimumab) which means fortnightly self injections using a click-pen delivery system. I’m just waiting for an appointment to go through the logistics of delivery, storage etc and then it’s a go. I can’t wait. 

One of the reasons this medication and others like it are not offered until other drugs have failed is the cost. According to the most recent information I can find online, Humira costs the NHS £352 per injection. With 52 weeks in the year that’s over £18,000 per year. Shocking isn’t it? I’ve only become conscious of medication costs since chatting with my lovely RD friends in the US, it’s a horrid reality for them every time they so much as call a doctor. So I’m very grateful for the NHS right now, believe me. 

So what is a biologic, why is it so special? They are actually genetically engineered proteins derived from human genes. All very modern medicine!In simple terms they target specific areas of the immune system, Humira in particular blocks a chemical reactor that causes inflammation called TNF. Biologics are only prescribed for moderate to severe RD, and have revolutionised treatment  over the past 20 years or so. This more aggressive treatment can help reduce the chances of long term disability and have changed many people’s lives.  I’m hoping this will be my ‘magic’ and allow me to enjoy a better quality of life, which is why I’m prepared to take the risks associated with biologics. 

They can read as very scary. Even on Humira’s own website, the first thing you see is a warning.  Firstly that serious infections can occur whilst on Humira and some people have died.  Secondly that there is an increased risk of some cancers. According to the Journal of the American Medical  Association the risk increases three-fold the chances of  Lymphoma, skin cancer and a specific type of T-cell Lymphoma that commonly results in death. Plus of course the full range of more ‘normal’ side effects. Definitely not to be taken lightly. 

So why take this risk? Two things:

  • Firstly I would really like some proper quality of life back. To be able to get out and about more, not have to cancel arrangements because I’m too ill or too fatigued. I love my friends, I’d like to see them more often. Believe me fatigue is incredibly debilitating, unless you’ve had to sit down exhausted after something as normal as taking a shower you have no concept of just how awful it makes you feel. 
  • Secondly I’d like to slow the progression of my RD and hopefully keep my joints working to some degree. My RA hasn’t been controlled at all yet and whilst my joints haven’t become obviously deformed they is ongoing damage occurring which causes incredible pain. 

So yes, I’m excited. I know some people who refuse biologics because of the risks, and that’s absolutely their right. However for me there’s no alternative but to say a heartfelt yes please. If I can lessen my pain and swelling, and hopefully reduce some of my other RD symptoms like night sweats and  hot flashes, AND get some energy back then I’ve got to grab that chance with both hands! Maybe my dream of returning to work of some kind could even become a reality! 

As with most RD drugs I won’t know for around ten weeks if this is working for me, so it’s not an overnight fix. And I’m fully aware it may not work for me, I have to keep that firmly in my mind too – not negativity but reality. My rheumatologist has already said if this doesn’t work she will try another biologic which is delivered by weekly infusions, so this isn’t the end of the line by any means. 

I’ll obviously post here as soon as I know more and receive my doses, in the meantime you’ll still find me napping 😉

(As always please do not consider this post in any way medical advice, any errors are my own!) 

Healing begins with Love 💙

I’ve been pondering for a few weeks where to start with this blog post.  I know what I want to say, I’m just hopeful it comes across as I mean it to!

In March this year, following 18 months of chronic illness with RD, Fibromyalgia & degenerative disc disease all playing together, plus the recent death of my Mother I kind of reached a tipping point.  I’m deliberately not using the word breaking! But I’d had month after month of pain, depression, anxiety, aching, medications,  fatigue, painsomnia and nothing was really changing – I wasn’t feeling ‘better’.

It was a sink or swim moment.  I could either drift along as I was, feeling pretty miserable most days, or I could look for help.  But what? Who? Where? So I hit trusty Google and followed where it led.  And boy was the universe ready for me to reach out! I started looking at mindfulness retreats, found lots of very out there options which included raw foods and tents, which aren’t necessarily my scene!  But whilst stumbling from link to link I came across the wonderful lady who was to change my life.  There is no other way to put that, and I truly believe we were drawn together.

Demi Schneider is simply one of life’s good ‘uns, and an insightful, generous and empowering lady.  A Clinical Hypnotherapist & Psychotherapist, Metaphysical Life Coach & Author of “Beat Your Depression For Good” – she powerfully challenges and guides us to look within for our own joy. To care for and love ourselves.  To be happy!

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In simple terms what we think is all powerful. And it’s our choice! And that choice dictates how we feel, emotionally and physically.

It’s easy, rational and possible, but it takes learning, acceptance, meditation and work.  We have years of learned negative thinking patterns to turn around before we are able to allow ourselves to truly be open and actively listen to what our body is telling us. 

It’s known that the subconscious mind can’t tell the difference between imagination and reality.  So by changing our thought patterns to positive (for example repeating ‘I am calm and in control’ when feeling anxious), we physically change the chemicals our brain releases – increasing serotonin.  And when you feel better, you feel less pain. 

Does it relieve pain? A little, yes, and I’m in my early days.  Is it worth it? Absolutely, allowing peace and acceptance into our lives brings joy and happiness to our minds and our hearts, regardless of circumstances.  Loving ourselves rocks!

It’s not a magic cure, but it is a much nicer way to live, especially with chronic illness when things can seem very bleak.

Namaste 💙

Unbreakable Bonds

As some of you will know the reason I’ve not posted for a while is that my Mum had been poorly, and she has recently passed.  She unfortunately suffered from dementia in the last couple of years of her life, and as anyone who has been through this knows you feel you’ve lost the person you love before they’ve gone. 
I found this so hard, but tonight I have sat quietly, lit candles and drifted through memories of her long and happy life, both those I share and those I will never know. I feel she has been here with me, helping me to remember the person I love, and it has given me so much peace. So I ask you to indulge me….

I remember seeing this picture of Mum when I was a child, and wondering that she was ever this young, glamorous girl.

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We so often don’t think of our parents as people, having lives and loves and stories that started long before us.

I’m fortunate that Mum shared some of her story, such as starting work in the London Stock Exchange when she left school, and working there for over 25 years, becoming a Gilt Edged Securities Clerk, managing three girls under her and literally processing millions of pounds.

Or her travels to Kenya as a single woman in the 1950’s, visiting her dashing older brother, a pilot first in the RAF then privately after the war. I will never forget her very matter of factly telling me how she had hidden in the back of a car for hours from hostile attack during the Mau-mau uprising, very much my Mum, always understated!

There are some lovely b/w shots somewhere of her holidaying in Jersey before she met Dad, and I would love to have known this beautiful, bright career woman.

The Mum I knew had such warmth, kindness, generosity and love. She had stopped working, but she never stopped moving. Cooking, baking, sewing, knitting, embroidery, card making… A truly creative and talented lady.

Just from my recall in Randwick where we grew up she volunteered at school doing reading and crafts, helped run and was treasurer of the playgroup, became Brown Owl for the Brownies, and was an active member and fundraiser for the Mothers Union and the Women’s Institute  – all while raising two slightly lively(!) girls.

In later years she moved to Great Bedwyn, became President of the WI for a time and was a massive support to The Bedwyns Link Scheme, an active village voluntary scheme providing cross community support locally to all who needed it for over 15 years.  Wiltshire Life presented her with a well deserved Carer of the Year award for this tireless work.

The sheer number of cards we have received, sharing memories of her and mourning her loss have been an amazing testament to the hearts she touched along the way. Nearly all of them mentioned her smile, which to the last could light up a room. 

Mum I will miss you more than words can say.  You truly were an inspiration. I learned from watching you how to be fair, how important it was to be caring and generous with others. 

Through my adult life you have been a gentle constant presence, never judging, just loving and welcoming as always. I’ve probably taken that for granted sometimes, but you have been like a light in the window that has always been there to welcome me home and make me feel loved.

I want you to know how much I love you.  It’s that simple, and that huge and that magical.  That bond is something that time and the universe can never break.

Always, your loving daughter, Denise.