Excuse me, I’m Dormant…

I sort of feel I should start by apologising for being so quiet recently, especially with blogging, but the spoons have been really low for a couple of months. I feel the balance is tipping towards more ‘bad’ days than ‘good’. I dislike using those terms as they feel like I’m judging, I’ve hit the trusty thesaurus, how do dormant days and wakeful days sound?

The definition of dormant seems particularly apt – adjective: dormant (of an animal) having normal physical functions suspended or slowed down for a period of time; in or as if in a deep sleep

That accurately sums up about 40% of my time. Maybe more. At the moment I feel like I’ve hit a medical stalemate – another great word – any position or situation in which no action can be taken or progress made.

I saw my GP (who is fab) on Friday, we ran through a few symptoms where her answers were, not unreasonably, that there’s nothing that can be done. Of course if a,b, or c get worse let her know, if not do my best to continue to live around them. She has the option to refer me back into the hospital Fatigue Management team so to keep that in mind for the future.

FYI I’m not being ignored, I have ongoing support from Thoracic (lungs), Rheumatology (joints & lungs), and Orthopaedics (spinal surgery, sciatica) as well as my GP.

But none of these stop me doing this. Sleeping for 16, 18, 20 hours at a time. I track my sleep now because I’m not sure people believe me, but I’m genuinely out for the count, I don’t wake to pee, drink or eat, and a bomb could go off without me stirring. Usually after a sleep like this I wake but can barely move, it takes everything I have to stay upright just to make a coffee and maybe toast. It’s like the worst flu feeling quadrupled. I literally stagger to the kitchen and back, almost on my knees.

And every time within two hours I’m passing out again. I use passing out deliberately because that’s exactly what it feels like, it’s almost as if I can feel my body shutting down, to quote the Borg “resistance is futile”. I spend approx two to three days a week like this.

To be clear here I’ve been diagnosed with RA, Fibromyalgia, ME/CFS, and RA-ILD (Interstitial Lung Disease). All of which will be contributing to this dreadful fatigue, though my suspicion is this is much more ME than the others. I’ve attended pain management sessions and fatigue management sessions which mostly revolve around pacing and CBT. Unfortunately as anyone with ME knows the use of CBT as a tool to improve fatigue has been totally discredited. And pacing just doesn’t work.

Pacing is actually a very simple technique. One monitors one’s activity and fatigue levels for a few weeks on a chart, then you calculate an energy ‘baseline’. So let’s say the average day allows you three hours of low activity. You plan around this and you slowly work on building up. Sadly this model assumes a number of modes of behaviour are manageble for the patient – such as getting up at the same time every day, sleeping for the requisite number of hours per night, ceasing to nap during the day, and that after sleep one feels refreshed.

None of this applies in my case. When I mentioned to the fatigue team that I can spend two or three days a week sleeping (dormant) they told me this “wasn’t usual” for ME. I thank the stars for the Internet, there is a lively community online who very quickly taught me I’m not alone, and I’m definitely not an aberration. In fact I’m fortunate, there are people with ME who’ve not left their beds for years.

I can sleep four hours or twenty, I never wake feeling refreshed. I can’t choose to not nap when I can be awake and say, reading one minute and the next it’s six hours later. Yes, my internal nap monitor is screwed too, it’s never just twenty minutes! I can’t work to a normal “sleep pattern”, when I’m dormant I not only sleep through alarms, I’ve slept through my cleaner coming and going, and a few weeks ago just crashed on the sofa whilst a friend was building me a walk in closet, thankfully he understood as his mum has ME so he finished quietly and tiptoed away. Bless him.

But I think these examples clearly show this is not down to me giving in or not trying. I don’t see anywhere to go from here clinically. So my only realistic option is to continue to flex and enjoy my Awake around my Dormant.

Yes this makes planning difficult. There are hospital appointments I’ve had to reschedule, blood tests I’ve missed. More important to my sense of engagement with life is the birthdays, the weddings, the lunches and the family events I’ve missed. It’s been a long time since I’ve felt guilty for these, I know now I have to listen to my body, but it still saddens me to have to cancel.

Is this difficult to live with? Yes of course, saying otherwise would be disingenuous. I think anyone faced with the reality of losing maybe three or four days a week, every week, for the rest of their life would be floored. I think the blessing here for me is that this hasn’t been a sudden notification, it’s happened gradually over the past few years and whilst I’ve railed and wept I’ve also become accustomed to these limitations being my life.

It’s just that this conversation on Friday finally drove home that this is here to stay. There is no magic pill or potion, therapy or faith that will make this change. Stalemate.

And so comes acceptance. So I will continue to try to see my dormant days as necessary recharging, to allow my wakeful days to happen. I will continue to try every day to find both gratitude and joy in my world. I will continue to use my toolbox containing items as random as meditation and tramadol, heating pads, mindfulness and antidepressants. And I will continue to find my joy in the smallest and often unlikeliest of places. Eyes wide open.

Namaste 🕉️

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Things I wish I’d known.. 

What do I wish I had known at diagnosis? This started out as a short response to a seemingly simple question and ended up here, I guess I always figure why use ten words when you can use hundreds!

1. That there is a fantastic, amazing and committed online support community. That these strangers would become my home, my family, my friends. There is an amazing bunch of people out there, living #chroniclife just as I do, and they are all passionate about providing support, information, safe places to chat and vent, and somewhere to go at 3am when the regular world is asleep.

2. That getting the diagnosis is not the end, it’s the beginning. Just after I very first joined a wise RA’er told me that this is a marathon, not a sprint. Three years later I get it.
3. To take all the RA stuff seriously, but learn to laugh at it at the same time. It’s very easy to get bogged down under it all, so spot the funny moments and treasure them, they do help! (Getting stuck in a hotel bath springs to mind!)
4. That everyone’s RA is different. There are similarities within recognised parameters, but you may suffer some things badly and others not at all. That doesn’t make you odd or weird, we all feel this differently
5. That #selfcare is the single most important thing you’ll learn to do. You can’t pour from an empty bucket, so look after you properly, then you can be there for others. Putting even family before yourself is a mistake, I always think of the airplane oxygen rule, you first, children next.
6. That it’s perfectly possible to have even severe RA and live your life with love and joy and hope. You’ll find your way, and there are others who are here to help, always.
7. That it’s OK to scream and rant and rave and be angry too. We all do it, venting is welcome! Letting off steam occasionally is I believe an essential part of processing and accepting your diagnosis
8. That no one can tell you how a medication will work for you. Not your rheumy, not your doctor and not us. Unfortunately RA treatment is trial and error – many people hit their magic med first or second time and probably never join online groups because they don’t need them. Others will have meds fail them over and over, or provoke allergic reactions. The only way to know what will work for you is to try it with your rheumys support and guidance.
9. That you will find your way through this. You’ll learn how your RA behaves, what helps and what doesn’t, when you need to rest and when you need to work through. It’s not a quick or easy process, but I promise you will get there 💙

RA & Lung Disease, or my struggle for breath

Firstly my apologies for sneaking in a wildcard at the end of RA Blog Week, but I’ve been suffering badly with fatigue which is unfortunately not conducive to blogging!

It’s been a long year already, and it’s left me a little tired. Let me take you back almost 12 months….

October 1st last year I started coughing. An irritating dry cough that was constantly annoying. By the beginning of December my GP ordered a chest xray ‘just to cover all bases’ and prescribed a steroid inhaler to help with the cough, which we thought might be Bronchitis.

Around Xmas I started getting breathless on exertion, and over the next few weeks this got worse. My xray came back showing ‘some scarring’. I’ll cut a long story a little shorter here but over the next few months I had a number of attempts at spirometry tests which failed as I coughed too much, though they did indicate a restrictive breathing pattern. At this point I was referred into the hospital, and after more detailed HRCT scans, Fleuroscopy, a bout of pneumonia and extensive lung function tests it became apparent that the RA has attacked my lungs.

In the last meeting with my thoracic consultant I got to see the scans, including a short “video” of my lungs breathing. It’s fascinating to see, you know me and wanting the fine detail! What it’s also shown is that on top of the lung damage – which is very likely from the RA – my right hemidiagphram is significantly elevated, though still thankfully working. The diaphragm is essentially the muscle that moves your lungs when your brain says breathe.

I’m saying it looks like RA damage because the jury is still out, there’s still a small chance it could be pulmonary fibrosis and not interstitial lung disease – further tests will keep an eye on progression of the lung damage and help identify the cause.

But essentially parts of my lungs have become inflamed, and then hardened, reducing my lung capacity and making it harder to breathe. On top of that the raised hemidiagphram is squashing the bottom of my right lung which just increases the breathlessness. We don’t know why that’s elevated so investigation is needed there too.

There is no fix, no cure. Lung tissue can’t be repaired. At the moment my consultant doesn’t feel this will significantly shorten my life, but we all know life don’t come with guarantees. I’m not being negative here, just sharing the facts as they’ve been put to me.

Unfortunately whether I live another four years or forty, I will have to live with this constant breathlessness. It was particularly difficult the first few days here in Cyprus as my lungs struggled with the hot air, making breathing incredibly hard even on mild exertion. This has now eased somewhat, hopefully in part due to the new inhaler I’m on.

But daily life has become that much harder. What makes me breathless? Making a coffee. Having a shower. Getting dressed. Turning over in bed. Walking short distances on crutches. Cooking. Basically everything. I’m also increasingly tired, probably due to low oxygen saturation levels which are being monitored, but on top of ME/CFS this has been a big drain on my already limited energy. I’m slowly learning to take pacing activity to the nth degree, quite literally tiny baby steps.

There have been moments when this has been very scary, but I’ve come to realise it’s almost like starting over again with a new chronic illness. Except this time I’m better prepared. I don’t need to slog through the ups and downs of adjusting mentally because I’ve been there. I’m certainly not willing to allow – or even in a place where – this can knock me down.

So, both mentally and physically I take those baby steps forward. I still meditate regularly, practice mindfulness and gratitude daily and these help keep me sane (ish!). In all seriousness without these I’d have been floored by yet another chronic health issue, but living in the now definitely reduces stress reactions. I’ve had my moments believe me, but they’ve been mostly manageable.

I think it’s important to remember that as with my first diagnosis of RA, this isn’t an end but the start of a new, slightly tougher path. And with the support of some amazing friends and family I can learn to live with this too.

Please remember as always nothing on my page is intended as medical advice and any errors are my own!

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!)