Medical Roller-coaster!

Posted on by SingleRheum

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 

Posted on by SingleRheum

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

RA – My Story… 

Posted on by SingleRheum

​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

Posted on by SingleRheum

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! 

Posted on by SingleRheum

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! 

Simply Christmas 

Posted on by SingleRheum

I just wanted to let every one of you, my lovely readers, know that I am thinking of you this morning. I’m here in Cyprus with my brother and his family, we’ve opened presents by the tree, Christmas music is playing and I’ve had a long phone chat with Dad so all is right in my world today.. Except.. 

Of course RA is here, muscling in on the festive season – we shouldn’t expect differently I guess, though one can always hope! So yes, meds with breakfast as usual, and because I’ve had a couple of fairly active days with the kids every joint is grumbling along with my spine which is just slightly on fire. A lot. 

But today I choose to be happy. I adore spending time with family, making new memories and remembering old is so important. So my wish for you is that you can do the same today. Forget stressing about Xmas, I’ll let you into a secret – if it’s not perfect no one cares! 

Spend time with those you love, whether that’s in person or on the phone. Relax, enjoy and yes, eat too much of your favourite foods! Use that heating pad or tens machine,  have a glass of something lovely, put your feet up and please remember #selfcare, none of us want to be flaring badly tomorrow 💙

In Loving Memory… 

Posted on by SingleRheum

​Tracy Campbell Pierce 1978 – 2016

#RATRAYWARRIOR 

It’s hard to know what to say here. I wouldn’t pretend to know Tracy well, but she became an important part of my online RA family. What comes to mind when I think of her first and foremost is her innate kindness. This lovely lady had the heart of a lioness and the courage of a warrior. 
Despite and because of the impact of RA on her own life, she was a passionate advocate for us and I admired her drive and dedication in the face of this illness.

 The wonderful ‘RA Tray’ Facebook group, her beautiful jewellery, her art work and her poetry were all ways in which she not only portrayed her own strength, but encouraged others to be strong too. 

She created a beacon of light and a place of safety for so many in a dark place, and that’s why we all will miss her so much. She posted this photo a few weeks ago, I hope she’s aware that she achieved all of this and so much more. Because of her we will never give up. 

When I think of her I will always think of purple and blue butterflies,  Fly high and free Tracy 🕊️💙

Finding Balance 

Posted on by SingleRheum

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

Zombies Have More Energy! 

Posted on by SingleRheum

I know I’ve often said fatigue is the hardest thing to explain. I know from speaking with others that Chronic Fatigue is incredibly misunderstood by those that have never felt its effects. The nearest most people can compare it too is feeling tired, and that’s like comparing a whisper to a shout. 

I’m deliberately trying to write this now whilst I’m in it, even though just holding my phone and touching the keypad is stupidly hard work. I feel fatigue every day, it never leaves me, but two or three days a week it overcomes all and I am capable of nothing but sleep. 

I’m just coming through a fatigue flare, I slept around twenty  hours on Sunday, eighteen yesterday and about twelve hours last night. I’ve been awake since 11.30am this morning, though I use the word awake loosely, zombies have more energy! I’ve literally fumbled my way from the bed to the sofa, and here I’ve stayed. I could list a few easy metaphors, walking through water, seeing through fog, swimming through quicksand but none quite capture the completeness of fatigue. 

It’s as if every limb of your body is filled with lead, your thinking is slow and clumsy, you fumble and drop things, and you seem to have suddenly lost the arcane magic that allowed you to coordinate limbs, judge distance and weight. Covering the ten feet from the sofa to the kitchen seems a marathon, and I drop onto my kitchen stool to rest before attempting to lift my arm and switch on the kettle. 

I suppose the nearest obvious experience to understanding fatigue is the flu, but please know I mean Influenza, not your last bad cold. Flu is actually an apt comparison, as actually very similar processes are being undertaken by the body. 

Our immune systems are fabulous and complex, and most of the time they are incredibly efficient. So with an enemy to defeat, for example the flu virus, the immune system does two things. One – attacks the virus, and two – shuts down all non essential systems so all energy is diverted to repelling the enemy. Simple and to the virus, deadly. 

However with RA our immune systems are unfortunately badly confused, and they daily try to ‘repel boarders’ that are actually our own selves. So the shutting down or fatigue, is constantly being ordered to allow us to heal – except its not needed. 

RA is of course just one potential cause of my fatigue, I also have Fibromyalgia, and my GP believes Chronic Fatigue as a separate diagnosis. I’m kind of past the point of minding at the label, I’d just like a cure please. 

Interestingly I’ve today received a letter from the Centre for Fatigue Services at the Royal National Hospital for Rheumatic Diseases in Bath. I’ve an appointment in the next few weeks. Both my GP and I are quite intrigued, she has no idea exactly what they offer or do as I’m the first patient she’s managed to get through their screening process (Nine vials of blood for tests).

I’ll certainly update you on the what and the how after I’ve been to see them, and if I need a reminder of how fatigue feels on bad days I can refer back here 😉 

#rablogweek 4 – The Pain of Pain Meds 

Posted on by SingleRheum

The pain of pain meds – Pain medication prescriptions are difficult to obtain and scary to use. What horror stories do you have because of new laws? Maybe you have been treated badly at the pharmacy or by family members? Tell your story today.

I saw today’s prompt and it immediately reminded me of how lucky we are here in the UK. I’m sure many patients here are unaware of just how difficult it is for our fellow patients, in America particularly, to obtain pain meds, or even just their RA meds. 

I’ve never walked into a doctors appointment thinking how much is this going to cost me. I’ve never been refused pain medication. I’ve never had to choose between getting this month’s meds or buying food or petrol. I’ve never had to be drug tested before being prescribed the next months pain relief. Unfortunately all of these are everyday day realities for RA sufferers in the US. 

I’ve posted previously about pain meds, and no doubt will do again, it’s a topic that is unfortunately treated with disdain and judgment by many, including the more ignorant amongst our  journalists and politicians out there who happily call us addicts with no knowledge of the very real decisions we take daily about our pain relief. 

I often think the biggest misapprehension about pain meds is that they take away the pain.I wish! What they do is dial it down. Think of it as listening to music really loudly, then turning the volume from 10 all the way down to 2. It’s still there in the background, but at the lower level you can work around it, and get on with your day. 

Second annoying misapprehension? We’re all getting high. Cue loud ironic laughter from across the chronic pain community. I have never gotten high from a pain med, not even opioids which I use daily. I’ve been nauseous, and occasionally even vomited.  Not exactly tempting me to up the prescribed dose or take extra for a laugh. Yet that is my choice when my pain is really severe, I can take oxycodone and stop wanting to cut a limb off, knowing that instead I’ll feel severely nauseous for the next hour.

But – at least I can get my medication. My GP prescribes my pain meds without fuss.  I’m guessing this is because we have a good doc/patient relationship, we discuss regularly how I’m doing and she knows I don’t overmedicate or abuse my pain meds ergo I have no problem with getting them. 

I honestly don’t find using pain meds scary. Maybe because I see them simply as one of the tools in my RA toolbox, they sit there alongside heating pads, voltarol gel, my RA meds, compression gloves, wrist splints, crutches, meditation, aromatherapy etc. 

I also don’t buy into the addiction BS that the press tends to throw around. I don’t know the figures for the UK, but I do know in the US addiction rates among patients who are prescribed opioids is less than 4%. Opioids just aren’t the big scary med they are made out to be. I worry more about the potential effects on my liver. 

So, yes, I will continue to use my pain meds, and I will do so without any shame. I will also continue to try and educate anyone who chooses to judge me, or anyone else,  for making an informed and rational decision about how I manage my pain. Walk a mile in my shoes…..