Simplifying Part One – Living Space 

Posted on by SingleRheum

I’ve not done this before, but I’ve just come up with an idea for a few linked posts around the theme of Simplifying. It’s a term we hear a lot, especially in chronic life, of course simplifying makes things easier! Sounds obvious but is it? 

So what exactly do we mean by simplify – common synonyms include to make easy, make plainer, remove the complexity from, or make more accessible. Whilst the latter here would appear at first glance to apply to ‘us’, because accessibility is often at the forefront of our minds, the rest are certainly appealing to me too, who doesn’t want things easier or less complex?! 

So we agree simplifying stuff is good. Where do we start? The first one I’m writing about here is in the home, our living space. Whether it’s a palace, a bedsit or my own little bungalow there are definitely things we can do to make our daily lives easier.

And immediately one of the biggest challenges for a lot of people raises it’s head – where to start! When you have a houseful of things that you may have had for one year, five years or even thirty years, it’s very difficult to at least partially detach emotion from belongings so you can make sensible decluttering decisions with a clear head. But it’s really important that you do. Stuff is just that, stuff. Good memories live on in our minds and our hearts. 

Often this is where you can enlist help from a practical friend or family member, they may help you keep a clearer head. Keeping a pearl ring because it was grandma’s is a lovely momento. Keeping an odd sock she knitted in 1963, or a chair she sat in once, not so much. 

I’ll admit I find this easy, as I’ve never been very attached to things, I believe it was because my lovely mum was a…. collector 😊 so I’ve just gone the opposite way. I always remember the mild but tangible panic in our house the day before family visited, piles of stuff (from magazines to ironing) that had mysteriously grown were hidden upstairs or squeezed into cupboards before actual cleaning could commence. Don’t get me wrong, it was never dirty, it was just always cosy and cluttered.

I’ve spent a number of my adult years married, so it’s only really in the last five years I’ve truly discovered my own decorating style, and whilst not stark it is a little minimal. I’ve had friends comment how tidy I am. I’m truly not, I just don’t like clutter so I put things away. They have a place, and that generally means I can find them!

But yes, even I had a challenge downsizing from a three bed bungalow to a small one bed bungalow eighteen months ago.  And I’ve cleared out again since, because I still brought too much with me. With every room I’ve had a rule, if it’s not truly beautiful (to me) or useful it goes! Using a combination of local selling sites have netted me money for a lot of bits and pieces, and charity shops have benefitted too. I just sold a mirror today for £20 😊

So how do you simplify YOUR living space? My top tips

  • Pick a room. Never attempt more than one room at a time, you’ll get disheartened and give up. Once you’ve chosen a room split it mentally into sections. So if you’re doing the bedroom for example, break that down into the chest of drawers, the bedside cabinets,  the dressing table and the wardrobes. This way when you start running low on spoons you’re never in the middle of a big clear out, so it’s manageable to finish one task at a time. 
  • Wherever you’re cleaning grab three bags, crates, boxes, whatever is suitable. Then label these (mentally is fine!) Sell, Donate, Trash. Anything you’re keeping simply stays in the drawers/wardrobe etc – easier to sort it when you’ve got more space. One rule here – items can swap boxes but they can’t come back out, be strict with yourself! 
  • Stay organised. If you get help to stash boxes in, say the garage, until you’re finished make sure the donate/sell piles are separate, and the trash goes directly in the trash bin. 
  • Be as unemotional as possible, and as ruthless as you can stand. If you’re finding it hard, think of the money you could raise, the good you’ll be donating, and how lovely it will be to have your nicer things accessible, clean and tidy!

If you’re still feeling up to it, once you’ve cleared a room and before you start the next give a once over with a critical eye. Does the layout work easily for you? Can you move or lose a cabinet or table now you’ve cleared it to give you more space? Will that chair be nicer by the window? Trust me, this is addictive, I promise once you’ve done one room you’ll be itching to start the next!

Just remember, small manageable chunks, spread out your spoons. Keep reminding yourself you are simplifying, making things easier for YOU! 

So how am I doing? Good so far, slowly but surely, I even raised enough from selling last year to buy a new (second hand) sofa! I have just three spaces left to tackle. First is my bedroom, it’s almost finished, just the wardrobes to do now, which I keep putting off. I never said I was perfect! Next is my cloakroom cupboard. I know I have coats, shoes, boots etc I’ve not worn in over a year and they need to go. Last will be my ‘office’ cupboard in the hall which will be the easiest by far. Some of this simplication will definitely bring me a little money. Now I just need to dig up the energy!

Choosing to be happy… 

Posted on by SingleRheum

I was reading an interesting thread on twitter this morning and it emphasised something I’ve noticed online over the last few weeks. First I’ll give an example – this particular thread had asked the question of disabled people “With optimal support how different would your life be?”

The answers fell into two distinct categories, either “I’d write/study/move house/volunteer” or “I can’t imagine this / I don’t have the energy to think about this”. Now you could say perhaps some of the responders were more physically impaired by their disability, or that they deal with more debilitating symptoms. But having been noticing this for a while now I don’t believe this to be the case.

We can all choose how we think about something. And making that conscious choice has a huge effect on how we subsequently feel. Bear with me here – if you’d have told me this a few short years ago I’d probably have become defensive or angry and felt you were criticising my thought process. It’s only due to some great therapy and a lot of reading that I’ve been able to reach a point in my life where I’m thankfully able to make conscious decisions about what I think.

The impact this has had on me has been so positive. Don’t get me wrong, it’s not a cure for my depression and anxiety, I’m still taking my pills and have days where it’s darker. What it has done is given me coping techniques to deal with those days without them turning into months every time.

In simple terms only WE are responsible for what we think. Yes, that inner voice is us too. It’s our head, our thoughts, our responsibility! And we make subconscious choices about what we think, how we react to things, how we will respond. So why not make those choices concious?

Let’s use my Saturday as an example. I woke around 11am, did the usual coffee/bathroom/clothing stuff then went to meet some friends in my local for coffee. I was there for about three hours, sitting down, chatting, crosswording and laughing. Then I went home and crawled into bed, took a double shot of painkillers and didn’t move again for six hours. This is fairly standard. Activity = pain + fatigue.

I could quite justifiably feel angry about this. It’s not fair, other people don’t have to pay for socialising, why can’t my meds work, why did I get this stupid disease, why am I so useless, I’m no good to anyone, my life is crap.

It’s an easy trap to fall into, I know because I’ve been there. But it leads down a very rocky path to anger, self pity, self hatred, and a feeling of total worthlessness. We convince ourselves we have no value. And that’s a self limiting belief, because we withdraw and huddle at home feeling sorry for ourselves, which means we don’t see anyone, which means they all hate us because we’re worthless. It’s a horrible lonely and despairing place to be.

But…! We have the power to change these thoughts. One day at a time, one belief at a time. There’s no magic trick or quick fix, it takes practice, and dedication. Which to be honest are small prices to pay for feeling better about yourself, right?

So Saturday night, laid up in bed. Was I angry, sad, feeling sorry for myself? Nope, not even close. Was I slightly peeved about the pain? You bet, but that’s as far as it went.

  • Rather than being angry I could only stay out for a few hours and then had to suffer I was grateful for the lovely afternoon I’d had catching up with friends
  • Rather than thinking my life is so awful I was thanking the universe for what I had – pain relief, a warm bed, heated blanket.
  • Rather than thinking I was worthless for not spending more time with friends I acknowledged that they love me, and enjoy spending time with me. And I’m very grateful for that gift.

I think the most impactful thing I’ve learned has been to practice self-love and gratitude. Both are simple concepts. Accepting yourself, and loving the unique person you are will be the most important thing you ever do for yourself. And practising gratitude daily is such an easy habit.

Start by listing three things a day. They could be time with friends, a nice lunch, a sunny day. And some days they’ll be bed, sleep, food. But you’ll find you start appreciating the small stuff, and realising it’s really the important stuff. Ever thought about why small children are so delighted by every little thing, so quick to laugh, to smile? They have no learned pattern of negative thoughts, they literally live in the moment.

So next time you’re about to tell the world how dreadful your life is, stop for a moment and watch what you’re thinking. There’s probably a jumble of negative thoughts whirring round all reinforcing your poor opinion of your life. So acknowledge them, and then let them go. Take a minute to think of what’s good about today. Toast, pyjamas, slippers? Great, that’s a start. Aren’t you glad you have them? ☺️

Honestly, give it a try. It is possible to choose to find the joy in your life rather than focus on the pain, and the outcome is you’ll start feeling happier. That’s what I call a win. Namaste 🕉️💙

Friendship & Chronic Life 

Posted on by SingleRheum

Previously published through Creaky Joints 

I was mentally restored by spending a few hours with two close friends last night. I’d had a stressful few days health wise which was exacerbated by an “unhelpful” medical appointment, leaving me spinning. I was off kilter, out of sorts, upset, angry, anxious, emotional and irrational. Yes, all in a couple of days! 

By the time I came home from a glass of wine, a lovely meal and most importantly the company of S&S I was feeling calm, centred, strong, rational and buzzing with ideas to resolve my problem. I feel this is the most beautiful thing good friends provide, they love you and fill you with energy. 

To me friendships are the most important and honest relationships we ever have. Family is wonderful when it works, but we all know that you can’t choose your relations! For want of a better word ‘mates’ or companions are fabulous and great for an afternoon of chat but not necessarily for baring your soul. Marriage has its own complications!

Yet making friends is quite a random process really, we meet someone, perhaps initially think they are interesting or kind or share a common ground, and from that somehow evolve into this incredibly trusting symbiosis. 

We aren’t consciously aware of doing so, but we must make a lot of tiny judgements about people who become our friends in the early days of knowing them. The dictionary defines a friend as ‘a person with whom one has a bond of mutual affection’ but I feel the word symbiosis comes closer – ‘a mutually beneficial relationship between different people’.

Initially that sounds a little formal, but add in the ‘mutual affection’ of friends and you have a beautiful symbiotic relationship. Yes, it’s about give and take, but of the intangible kind. You don’t look at a stranger and think they’ll be supportive at 3am when the dog is sick, or decide they’d be a great hospital visitor. You can’t tell at first that this person will be the one to make you laugh until you cry when you miss the train or forgot your in laws are coming for dinner. 

Keeping friendships going when you have a chronic condition can be tough, and making new friends can be harder, especially for those of us with a chronic illness but in my book it’s well worth the investment of spoons.
I’m blessed and I know it. I have a few close girlfriends who I adore. I’ve collected them over the years from various places, and they all have one thing in common. 

They didn’t run. They didn’t decide I was too sick or too needy or too boring or unreliable once I became ill. They don’t complain when I cancel last minute, they just reschedule. They post chocolates through my door at random times. They answer messages at night when I haven’t got the energy to chat but need to sense check my thinking about how ill I’m feeling or if I’m a little low. They’ve even cancelled work to sit with me on bad days.  They arrange a lunch with me for their birthday because they know I won’t make it out at night for drinks. 

They are also incredibly honest, and will happily tell me I’m being a muppet if needed! But most of all they lift me. They help me be the best version of who I can be. Their faith in me reflects my faith in them. I honestly don’t know what I’d do without these beautiful strong, intelligent women in my life, and I’m blessed that I don’t need to find out. 

I sadly all to often see people, chronically ill people, those with RA and Fibromyalgia and ME and MS saying just how lonely and  isolated they’ve become, particularly for those who’ve had to give up working. They’ve almost lost contact with the outside world, friends have drifted away following repeat cancellations, people stop asking them out because they can’t guarantee being there. 

Or they’ve fallen out with friends over well meaning but ill-thought advice. It’s difficult to remember people are only being kind, especially when you’re in a lot of pain and then you don’t feel friends understand so sadly all too often it creates a space between them that neither knows how to fill. 

So what have I done differently? I’m not sure I have a magic solution. I’ve perhaps just been lucky enough to make friends with some amazing ladies. I’ve always been open and honest with them, especially about my illness and how I feel. I think in some ways my blog has helped, they can read what I’m going through without it needing to be the topic of every conversation. 

I also think it’s important to remember that friendship, just like any other relationship takes work. I realised in January I hadn’t seen two friends in far too long, so I messaged them both and said OK, lunch when? Saw one last week, will see the other next week. Make that call, keep in touch. 

I don’t mean it should feel unnatural or be an effort, but that it’s important we put in as much love and energy as we get out. It would be horrid to think after recharging me last night that my friends went home drained, but it’s a reciprocal process, we chat, we laugh, we vent, we eat and we somehow make sure we each share what we need. It’s exactly the same with my other friends. You have to really be there and you have to actively listen (call it mindful friendship time!) to nsure they know they are special and they are loved. 

The payback is priceless, you feel special and loved too 💙

Medical Roller-coaster!

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 🕊️💙