Making Tea with Brain Fog

This You tube video made me laugh out loud.  Thank you so much Laura Chamberlain at Laura’s Pen.  I have done all these things so many times…..and I really don’t think it is just those of us with illness or drug induced brain fog that can relate!!

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3 Ways to Love Your Body (even when it’s trying to kill you)

Sometimes it is very difficult to even like my body, let alone love it when it is hurting and letting me down. This post written by Em, That Silver Spoonie got me thinking……

That Silver Spoonie

It’s really tempting to hate your own body when you’re chronically ill, especially when you have autoimmune diseases.  I mean, when you have autoimmune problems, you’re body isn’t even trying to ward off an outside invader…your body is literally attacking itself!

I had a very short stint with basketball in the 7th grade, and during one game, I accidentally scored a basket against my own team. I felt  great about myself until my teammates were all glaring at me and I had realized my mistake. That basketball game was a pretty accurate metaphor for autoimmune disease, except your body doesn’t usually have that “a-hah moment” where it realizes that it’s working against its own teammates. It just continues to screw you over, unaware that it’s trashing your body instead of trashing the enemy.

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“The #1 Reason your Healthy Friends Misunderstand your Chronic Pain” from Esther at Life in Slow Motion

This is a re blog of a post that Esther on Life in Slow Motion wrote in 2014 when she was starting her blog.  It is a great piece of writing describing what so many of us with chronic pain experience with friends, family & strangers – but Esther looks at some ways that we “chronic” bunch might be able to help others to begin to understand the difference between chronic and acute pain.

“Many communication barriers exist when it comes to describing chronic pain to family, friends, and other interested and uninterested parties. It has been said time and time again – something about chronic pain defies description. And if you are like me, you begin to dread those instances when you are faced with explaining your situation to healthy individuals who inevitably won’t truly understand.

In the midst of chronic pain, few things are more frustrating than taking precious time and energy to go into the details of your pain, only to be met with unsolicited advice, vaguely related stories, and various other responses that miss the mark of what you just so honestly and personally shared.

We all have stories of being hurt or misunderstood. Conversations seeking to explain our chronic pain so often go awry, bringing increased confusion instead of clarity.

Likely there are many reasons for this. At times there is an unwillingness to honestly share and a hesitancy to carefully listen. The subjective nature of pain is much better described through metaphor and art than everyday conversations. At times people are unempathetic, make unkind assumptions, or even completely disbelieve you.

Yes, these reasons are definitely culprits, but I do not believe any are the main culprit, the main reason, or the underlying thread that leads to the most confusion……….”

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Read the complete article here:

Life in Slow Motion – The #1 Reason your Healthy Friends Misunderstand your Chronic Pain

Review “PainXit Tens machine” from Zec at Sat on my Butt blog

It is always interesting to those of us with chronic pain when a new pain killing device comes onto the market.  With so much metalwork and a spinal cord stimulator, I would probably be limited as to where this device might be useful, but Zec’s positive review on Sat on my Butt sounds like it could be worth a go!

“I have been sent a PainXit – TENS machine from designed2enable, simply put it is a portable TENS device to help combat pain.

I have a full size TENS machine and I have used it for many years, it doesn’t help with all of my pain but I know when it is likely to help and when it isn’t. I also have a similar pen device that contains a piezo crystal and delivers a shock when you click the button but I have never found it to be much help.

The PainXit – TENS machine is powered by a AAA battery and delivers a 1000 w at 0.4 mJ , now I know that sounds scary but believe me it isn’t.”

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Full review can be found Sat on my Butt

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designed2enable website

Monday Magic

Monday Magic

Morning!  Having introduced you to the Chronic Illness Bloggers recently, I thought I would try something new and introduce a regular slot each week highlighting new posts from some of my pals over at CIB.  I have really enjoyed finding new blogs through link up sites, week end introductions etc, and I hope that you will enjoy getting to know some wonderful people.

So sit down with that coffee and take your pick:

  1. http://www.mymeenalife.com/chronic-disappointment-chronic-illness/
  2.  https://beinglydia.com/2017/03/26/product-review-pilldrill/
  3. https://thedisableddivablog.com/2017/03/18/choosing-the-mode-of-transportation-that-will-get-you-to-your-vacation-destination-without-too-much-additional-pain/
  4. http://www.achronicvoice.com/2016/02/04/you-are-miracle
  5. http://painlovehope.com/story-never-wanted-tell-need-hi-name-lisa-im-part-v/
  6. https://medicalmysterymusings.wordpress.com/2017/03/21/life-in-my-phone/
  7. http://coffeeheartmind.com/when-the-tables-turn-part-2/
  8. http://alifewellred.com/daily-body-restorea-different-kind-probiotic/
  9. http://thedailymanic.com/what-it-means-to-be-authentic/
  10. http://xofaith.com/psychosocial-causes-of-anxiety/

 

Visit some of these fab posts and leave a little something to say you have been there!

Claire x

Rheumatology, Cardiology, Falling Down and Midodrine

Finding the time and energy to write has been a challenge recently.  I’m not sure if you would describe my worsening ailments as a flare, but my poor, body has been struggling to hold things together.0ff7167e97f625a09a50879d90d5057c

Last week I saw my GP and my cardiologist and managed to get two new referrals in the process.  The first to a new rheumatologist, recommended by the London hospital who diagnosed me, and the second to an endocrinologist to check if the cardiologist is missing anything.  Don’t you just love these multisystem chronic illnesses?!

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For the rheumy we have a family outing on the cards, as the A level student and lovely girl have also been referred.  The bookings department called last Friday and asked if we would like consecutive appointments – I bet the consultant will love it when she sees the same surname appearing three times in one morning.  “What another genetic problem?!”  I have put off having the kids diagnosed with hEDS even though I can see elements in all three of them, but it has only been recently that I learnt from the lovely online support that they might be eligible for extra help in exams.  This is down to the pain and difficulty with writing that we with bendy fingers and dodgy collagen experience.  My daughter has never been able to hold a pen properly and they both struggle to be able write as fast as their peers – their brother, the uni student, was exactly the same at school.  In fact his fingers are so flexible that you might think they were missing their bones altogether.

The schools have responded really well and thanks to some fantastic blog posts that I was able to direct them towards, have now heard of Ehlers Danlos Syndromes.  We missed the deadline with the exams boards for the A level student to receive extra time (he needs a formal consultant recommendation) but he is allowed to be in a smaller room and to have rest breaks.  Had his typing been quicker, he could have opted to use a laptop.  My daughter’s school have been fantastic!  They are keen to learn – obviously they have seen me deteriorate after repeated surgeries and progress into a wheelchair – and many teachers have been upset to learn that she has not spoken up about pain, dislocations and difficulties in games classes.  Of course she is worried that a fuss shouldn’t be made as there are other people more in need!  But in terms of her year 10 exams after Easter, she will use a laptop and take rest breaks.  When I was at school I had no idea that the pain I always had and my difficulty getting through written work was actually down to a genuine problem – in fact at the beginning of this academic year none of us dreamt that our pain would actually be considered a reason for the kids to need extra help!  Of course the new guidelines came out last week for diagnosis criteria, so I’m not sure what they might be deemed as – well I could say a few choice words that have nothing to do with EDS!

More to come about the criteria and of course how we all get on.

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The EhlersDanlos Syndromes International Classification

I have been on the waiting list for a follow up cardiology appointment since the end of last year.  Immediately after my tilt table test, I started the synthetic steroid fludrocortisone to increase my circulating fluid and raise my blood pressure…if anything it made me worse as the faints, falls and injuries have come thick and fast.  My GP tried to have an appointment fast tracked, but when this couldn’t be arranged the cardiology department told me to double the fludro dose and continue with compression tights, fluids, salt.  I have felt so unwell and so tired!  Last week the consultant started me on midodrine, which in the UK can only be prescribed by a cardiologist for extreme cases of low BP that haven’t responded to conventional treatment.  It is early days and I am only on a low dose three times a day – but I cautiously think there is a small improvement.  The last dose of the day mustn’t be too close to lying down in bed as there is a risk of increased blood pressure when flat and strokes.  One side effect I do have is a strange creeping, tingling sensation of the skin particularly my scalp – about an hour after I take it when it reaches highest blood concentration level.  So if you see me out and I’m itchy, I really don’t have nits!!13413444_143336392741362_1604407187_n

 

It’s Time for Chronic Pain Patients to Act

Taken from Pain News Network

 

By Alessio Ventura, Guest Columnistdownload (3)

“I am a chronic pain sufferer who recently had multiple emergency surgeries due to sepsis infection after a shoulder replacement.

I have had 17 surgeries since 2008, including major back surgery, rotator cuff repair, biceps tendonitis, knee surgery and hernia surgery. Bottom line: my body is now wracked with arthritis and post-surgical pain.

I have tried several pain treatment modalities over the years, including Lyrica, Cymbalta, chiropractic, injections, NSAIDs, and acupuncture. The only effective treatment in my case has been the legitimate, professional application of opioid medicine by pain management physicians.

I have severe allergic reactions to NSAIDs, which kill 15,000 per year and send 100,000 to the hospital.  A friend of mine died from a stroke because of NSAIDs.

After my recent surgeries related to the shoulder replacement and subsequent infection, my wife had to travel to 25 different pharmacies before she finally found someone willing to fill my scripts for Oxycontin and Percocet.

This is not unusual though. Each month is a long trek to find pain medicine. What has happened due to government restrictions on opioids is a reduction in the supply of opioid medicine. The drug companies see the writing on the wall and are slowly trying to get out of the business.”

Remainder of article may be seen here: https://www.painnewsnetwork.org/stories/2017/3/13/it-is-time-for-chronic-pain-patients-to-act

 

Saturday Submissions: “Dysautonomia for Dummies”- With Evie from The Zebra Mom

Dysautonomia for Dummies from the fantastic Zebra Mom

Irish Dysautonomia Awareness

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple…

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