Living on the Edge

This blog has been months in the making. Possibly years. It has taken me a long time to try to get my thoughts in order enough to put them down, and it is difficult to do so without it sounding like a pity party, which it absolutely is not.

Back in January this year, we spent a long weekend camping at an Aqua park, the one in the picture. I knew before we left that it would be hard for me to participate. I also knew  the kids would LOVE it.  We decided to purchase day passes. I initially said we should just get one session for me, but my husband talked me into a day pass, so that I could come and go as I felt able.

We all joined the first session. It was hard. I wasn’t strong enough, I was too heavy, and I struggle to do anything that requires any real strength in my wrists/hands. I struggled to even get on to the park from the water. I persevered, and kept trying. I climbed a few things, hoping to slide down, but didn’t have the grip strength and endurance to get right to the top, instead sliding down over large hard plastic handles repeatedly. (I ended up extremely covered in bruises).

When it came time for the second session, I asked my husband to stick with me for 20 mins, as I thought that was all I could manage, so that he could help me a bit. He, of course agreed. And then promptly swam with the kids to the most difficult piece of equipment to climb, that I had no chance of getting onto. I was left on my own again, and I was crushed. I asked one of my kids to hang out with me, and she actually said no. I couldn’t even get near enough to my other kids to ask them. I was surrounded by people, and felt so incredibly lonely.

I was devastated. I felt left out, unloved, and really angry that I had to be the one to get Rheumatoid Arthritis. Before RA, I would have been fine. I was strong, and fit, a very healthy body weight, had plenty of energy, and I LOVED playing with my family. We had friends there with us that weekend, and I could have happily hung out with the other mum, who didn’t want to go on the aqua park. But I was so crushed by being left out of my family, that I was terrible company for her, and I am still embarrassed by my sulky behaviour that day ( I wasn’t actually sulking, I was trying not to cry in public). When we returned home from that weekend, I bawled my eyes out.

But that day highlighted for me everything that has changed about my life. Living with RA makes me feel like I am on the edge of pretty much everything.

I am chronically ill, but not life threateningly ill. Its not the kind of illness that makes people rally around to help. I don’t fit in with the healthy people, I can’t live the same way as healthy people. But I’m not so critically ill that I can stop my life and focus solely on that either, knowing that if I do, I might get better. There is no cure for RA. Remission is not that common. I don’t feel like I belong in the group of really sick people, but nor am I a member of the healthy population.

I used to be a runner. I am still a runner. I can go to park run, and I can make it through 5km (at the moment….there were a few years where that wasn’t possible and I have worked hard to be able to do that). But I run/walk. And have accepted over several years, that this is a realistic expectation of my body, and continuous running is not. I’m still running I guess, but I am definitely only on the outer edge of that community also.

Socially, I am very much on the edge. I lost a lot of friends when I got sick, when I was in too much pain to even hold my phone for any decent conversation. Even now, when my inflammation is relatively low, energy preservation and getting enough sleep are high priorities in order to minimise my inflammation, and maximise my coping abilities. I still see people, I have a good laugh and a chat and take an interest in the people around me. But between a job, kids, and RA, I don’t have enough energy to commit to developing more to lasting friendships.

Control of my illness is always on an extremely precarious edge. Doing too much, getting stressed, not getting enough sleep, not being careful with my diet, forgetting to take even a single dose of medication, attempting to reduce dosages (due to side effects), the weather…..pretty much anything can see me in a flare, and these flares can and do include severe pain and severe fatigue. Since many of my medications are immune suppressants, I also get sick easily.

Being an active member of my family is hard too. I often feel like I live on the edge of my family. We have always been active together as a family, and now I often find myself spectating their activities, rather than participating with them. Or find myself resting while my husband works in the yard, which I used to do too. I feel like even though I am around them most of the time, I spend a lot of that time on my own. And it must be as hard for my family to get used to how I am now as it is for me. Especially my husband, who spent nearly 20 years with the old, pre RA me. He never complains. He tries to help. He just doesn’t always understand how it is to be chronically ill, and could never imagine how it must be.

I work really hard to put on a smile and get on with my life. I don’t often ask for help, and asking for help is something I have NEVER been good at. When I do ask for help, like at the aqua park, I think people forget how much I can’t do, and how much effort it is to do the things I can. I put such an incredible amount of effort into keeping everything going, and doing everything I can do, and doing it with a smile, that most people don’t realise the struggle.

I am not feeling sorry for myself, although a couple of years ago I probably did. It has taken 3 years, and quite a bit of grief, anger, frustration and sadness,  to accept this illness and the way my life is and will be.

A few weeks ago, a friend observed to me that I always fill my life to maximum capacity, no matter what that capacity may be on any given day or week. I am proud of my perseverance, determination and grit. I am proud that I am still working to try to improve the strength of my body and mind, and giving everything I have available to the people around me.

I’m hoping that between my efforts to keep improving, and my efforts to share my experiences openly, I’ll get further and further from the edge, and so might other people with chronic illnesses.

Like the song lyrics by One Republic….

The only way you can know is give it all you have
And I hope that you don’t suffer but take the pain
Hope when the moment comes, you’ll say…

I, I did it all
I, I did it all
I owned every second that this world could give
I saw so many places, the things that I did
With every broken bone, I swear I lived.

Rheumatoid Mumstar? Rheumatoid Disaster.

A common theme on both my Facebook page and my blog is that I try to stay positive. Sometimes, I feel kind of ok, kind of how I imagine lots of other mums are feeling. Those days, staying positive isn’t too much work. I can usually find a way somehow.

Some days, it feels almost impossible.

I am having a rheumatoid disease flare at the moment. Every flare is different.

I’m about two weeks into this one. This time the biggest, strongest, most debilitating symptom is fatigue. Fatigue like the flu. Low grade fevers, aching muscles and an overwhelming need to not move, and not to think, and to sleep. I have had several day time naps. To put this in perspective, years ago, pre rheumatoid, I had 3 kids under 4, none of whom slept through the night. I was living on about 4 hours of broken sleep, but I did not need a nap. Ever.

This is not the feeling of being tired after a hard week. Its much much worse. The closest thing to describe this is probably like the fatigue of glandular fever. And now I have a disease that can inflict this on me, whenever it wants. Fatigue is not my only symptom right now, but its the worst. RA is affecting my neck and back, so I have daily bad headaches, plus my hands and feet hurt when I use them. To do anything. Shower. Cook. Eat. Hold a book. Ugh.

Today I started off happy. My husband, working away, agreed to call me in the morning to help me get out of bed to walk the dogs, as I’m really struggling at present. (It’s the only thing I do for me, and walking/attempting to run are a little bit of the pre RA me that I am trying to claim back.) I forgot there was a time difference between him and me, so I was really extremely grateful that he set an alarm to wake him up just to call me (he then went back to sleep).

I walked the dog. Slowly. This flare is hurting my back and my neck, as well as the other joints.

I got home to get the kids ready to take them to their surfing lesson. Apparently “we need to leave in 10 mins, my RA is bad, please give me a hand” translates to “hide under your sisters bed”. This would be funny if it was a once off. But its an ongoing pattern of task avoidance (including lying about task completion etc) that drives me pretty crazy when I feel ok, and when I am struggling to be up and about, really pisses me off. Unfortunately, its a pattern all three of my kids are well entrenched in, although certainly the two with Aspergers are worse than the other one. We are at a loss how to break the cycle (including the kids psychologist!).

The surf is pretty big at present, so I spent 1.5 hours on my feet in the water making sure my youngest is safe whilst swimming. The soft moving sand surface under my feet HURTS. My feet hurt. My ankles hurt. I’m getting sunburned as I usually spend much time under a beach umbrella when supervising.

I even take them to watch waves crashing hard on rocks and splashing up, which they LOVED!

Being a mum is hard.

Being a mum to three kids, two kids with Aspergers is harder.

Being a mum to three kids, two kids with Aspergers, whilst suffering from Rheumatoid Disease is ridiculously hard.

Being a mum to three kids, two kids with Aspergers, whilst suffering from a Rheumatoid Flare involving severe fatigue – while your husband is away….its a disaster!

So while I was struggling to be on my feet to cook the kids dinner tonight (including ensuring leftovers as I will be out late with them for their sports for the next 4 nights running, after working the whole time they will be at school) and one of my kids decided to take some of the pizza made for school lunches, and eat it 5 minutes before dinner was ready, and then try to hide that/lie about that to me, while the other two keep disappearing instead of completing the instructions they were given….

Disaster. Yelling. Shouting. Crying. Sent to bed with no dinner. I feel like I should have handled it better. I am the adult after all. But honestly, where am I supposed to find the reserves of strength to do that, when I have already given my day 150%. When I have been counting the hours til bedtime since 10am?

So, I’ll sign off now. Typing is hurting my wrists. My eyes feel like there is sand in them. And I really just need to be in bed.

Sincerely

Rheumatoid Disaster.

Use it or lose it – no, not your muscles!

Even if there is nothing you are really “talented” at, there are always things that come easier than others.

I find it easy to read books. And eat crackers and cheese. And drink wine. I can even do all three at once! I find it relatively easy to be organised (until I totally overload myself, then its harder). I find it relatively easy to be persistent.

Other things I find harder – like using a drill – as a drill or a screwdriver. Reverse parking in our car that does NOT have reversing camera – I find that a bit hard too. Being patient is not a natural forte either ( as I just demonstrated to myself when my son decided his rock paintings, which we will “hide” in public spaces for other kids to find, should be of male genitalia. Ugh)

Most of the things that we find hard are not impossible. With a bit of practice, I have learnt to use the drill as a screwdriver – in fact I put our outdoor furniture together pretty much on my own. I can reverse park the car – albeit a little slower, but I can do it.

I had someone tell me that all my efforts and achievements of late were making them feel bad. That has never been my intention. Most of my achievements are not really worth bragging about if I compare them to any one else. I bragged about taking more than 41 one minutes to complete 5km. But it was MY best. So I bragged.

I don’t think any of my achievements set me apart here – it’s that I find something good about my day or what I have done. It’s my positive attitude. But honestly, that doesn’t come easily to me either.

A year ago a friend of ours died. She was one of the the fittest, most energetic people I knew, and she died of bowel cancer. At the time, I was only weeks into a new medication, and was just finding myself able to move my body a little. I had been suffering in pain for a couple of years at that point, I had gained over 40kg and was barely recognisable in the face. I will still stiff, still hurting. And facing another 40+ years of this life I hadn’t done anything to create, or deserve, and I didn’t want it. So while I was grieving for my friend and her family, I was also a little envious. I was envious because her pain and suffering was over, and mine stretched before me with no end in sight.

My pain is less now. It isn’t gone. It is likely it will never be gone. But nothing has changed more than my attitude. I guess maybe thats the positive I can take from developing rheumatoid arthritis. My friends husband and children are inspirational in their positive attitudes to life.

I spend more time very day on finding the positives in my life, on having a sense of humour, on understanding that the negative feelings are transient, they won’t stay if I let them go, on being grateful, on finding the silver lining, than I do working on any other part of my life, including my health and fitness. And I am getting better at it. Practice does make perfect. Use it or lose it.

Sure, I have set backs. Some days are harder than others. But that’s ok. It is certainly easier than it used to be.

When I go out for a walk or a run in the mornings, my focus isn’t on being amazing, or even on being as good as I was before I got sick. Its enough to just go. I look for sunrises, sunsets, amazing landscapes, changing weather and scenery, for the fact that I am moving, regardless of it is fast or slow. I enjoy the time with my dogs, who were not walked regularly for over 3 years. I appreciate the break from my children, who I both adore and am thoroughly exasperated by.

Practicing a positive attitude is life changing. It also works. A quick google search will show you that there are hundreds of sites relating to this. If being positive doesn’t come naturally or easily, that doesn’t mean you can’t achieve it.

This week hasn’t been all that great. I have had a head cold, and it is amazing how easily my positive attitude can take a knock. But, I’ve bounced back quickly enough.

Today I went to my specialist. I was feeling strong, confidant and in control. I knew exactly what I wanted out of the appointment. I have walked away without what I wanted, but that is ok. I am grateful that my specialist heard my goals, loved them, and wants to support me to achieve them. But I am more grateful that he has the bigger picture in mind, and keeps an eye on the risks I face every day too. I will be making some medications changes effective immediately, because my liver isn’t looking so good. It isn’t an emergency – yet. So whilst I didn’t get what I wanted, I know he has my long term health, and more serious potential impacts in mind. He is also thrilled with my progress over the last 12 months, even though I find it frustratingly slow. It was a good reminder that slow progress is still progress.

What are my goals did you ask? I plan to literally conquer mountains.

(Not the really big ones, seriously. But we are travelling to Hawaii and Tasmania over the next 12 months, and all of the best views are at the top of mountains. I will hike them. 2 years ago I couldn’t walk the kids 2 blocks to school.)

PS. New Year, New Beginnings. I plan to ditch all of the odd socks today. We are starting fresh. Current odd sock count is therefore NIL! Woohoo!

PPS. That impatience of mine tripped my up – I had to write this twice, because I lost it. Because I was too impatient when the post was publishing. Talk about learning the hard way.

A MumStar Wannabe

We have been having a bit of a rough time in our house lately – unfortunately, its not uncommon. My kids are extremely active, intelligent and creative (sounds great, but its seriously a handful). Two of them also have Autism Spectrum Disorder, which for them includes – anxiety, difficulty with going to bed and falling asleep, sensory issues, rigid inflexible thinking, being critical of just about everything, policing everyone around them, easily frustrated, you get the picture.

Lately, I have had open defiance, lying, hiding rubbish instead of putting it in the bin, chronic chore avoidance, arguing, fighting, absolute refusal to share, speaking rudely and aggressively ALOT, and more.

Today, we went on a day trip, about an hours drive away. It was SENSATIONAL!

If you don’t count the whining about getting ready, simply going back to bed “too tired” to get dressed let alone unpack the dishwasher, (No surprises there, it was 10:30 before two of them fell asleep, after being put to bed at 9pm), the fighting in the car, the constant “I’m Hungry”, the arguments over putting on and reapplying sunscreen.

It makes me feel nothing like I am a rockstar at this mum gig. Just a total wannabe.

But really, if you think about it – just me, with rheumatoid arthritis, managed to pack the kids up, pack the car up, drive us all to the beach we wanted to visit, pack us up from the beach, take us out for lunch, and then take us for an ice-cream, and drive us all home again. I’m totally wrecked.

But in between the struggles, there are glimpses of what we are slowly achieving here. Eventually the kids did get their things together, and we all packed the car. The fighting in the car started when one iPad went flat. It stopped when I confiscated the other one. They all helped me cart loads of belongings down to the beach on my trolley/chair (BEST MOTHERS DAY PRESENT EVER!!!), they helped me pack it all back up again, lunch was easy, manners were pretty good (it was finger foods they ordered, that helps), we enjoyed our ice-cream, they were as thrilled with the view, scenery and weather as I was, and they unpacked the car when we got home. Even if I had to call them back. Twice. (But then washing the body boards turned into a hose war…hmmm).

And now the kids are cooking themselves and me dinner – some having toast, some eggs and bacon, I think I’ll end up with baked beans on toast. (Note: kids are 11, 10, 7). I have hit the wall in terms of fatigue, which means I have, again, given my day everything I have (and my personal trainer has left me with some very sore muscles, which will hopefully improve before ParkRun tomorrow!)

So maybe I am deserving of calling myself Rheumatoid Mumstar. The trick is trying to   keep remembering to look for the good bits sometimes.

I took this picture above when we arrived at the beach. How could anyone not have enjoyed that?! I don’t get a lot of days off with the kids that aren’t already scheduled with their activities….Totally Worth It.

 

Big determination…it’s called grit.

A few months ago, I watched a Ted talk about having Grit. About how it is the single common factor that predicts an individuals success. Much more than talent, IQ etc. I have watched this a few times, and talk about it often with my children, as two of them definitely lack the ability to persevere.

I don’t know if I am a success. Certainly that would depend on your definition. But I do seem to have a good supply of grit. No matter how much life throws at me, no matter how hard or overwhelming that is, no matter how many times I decide I can’t do it, and I won’t try any more – I just seem to be incapable of giving up.

A few weeks before Xmas, my work was absolutely crazy busy, and all the Xmas shopping needed doing, and the Xmas activities at the school were all happening, and my husband was away for work even more than normal (home 4 days out of 21!). We were getting more than one set of guests to stay, from the 27th December until today, and other family visiting in the area but not staying with us. Plus we had already decided to host both Xmas and New Years Eve at our home. And I knew that I would want to do so many fun summer activities with the kids, going surfing, and swimming, and playing board games, and having movie nights. Then, despite all of this going on, I realised that something I wanted to achieve was within my grasp.

At the beginning of 2017, I signed up to http://www.rundownunder.com.au, which is a virtual run around Australia. It tracks your progress by adding every intentional walk/run that you do. And a couple of weeks before Xmas,  I realised that if I walked 5 km every single day til the end of the year, I would make it to Sydney (it starts in Canberra). That’s a total of 286km for the year. Which doesn’t sound like that much but trust me, its been a hard year. Illness (I am immune suppressed), severe side effects from medications, rib injury (from severe cough when I had bronchitis), rheumatoid disease flare ups, way more travel than it was wise to commit to (11 trips away in the last 12 months), plus some major stressful incidents and a change of schools for the kids…you get the picture.

So, crazy as I can be, even at the busiest time of year, I set myself that goal. About half way through, I missed a day. So from then, I had to do 6km a day. I told lots of people what I was trying to do. I walked through some blisters, through sore feet, sore ankles, sore knees, sore hips. Sore hands from trying to hold the dog while he was trying to chase wild rabbits.

I even included park run in there, so it wasn’t all just walking. I even did Xmas day park run. I got more tired with every walk, I got slower with every walk, my body struggled with doing this amount every day. But I really loved being up and about in the mornings. My walks were scenic, along the river, and out the board walk (which is 1km each way) to the beach. I saw a bird I have never seen before. I saw sting ray, and fish, and low tide and high tide, and sunrises. I walked in the pouring rain, and the dripping humidity. I felt a bit like the old me again.

Then as our holiday progressed I also got missed sleep due to storms, kids wanting to be in our bed at night (they wriggle and kick a lot), and late nights with visitors, and way too much food and too much wine, and I got tired. And my kids got tired, and were well out of routine so that didn’t improve things at all (two of them have Aspergers).

And on New Years Eve, early in the morning, I reached Sydney in my virtual walk/run. Hardly anyone remembered to ask if I made it. It was a total anti-climax. And then we hit family drama, and when I woke up today, I didn’t think it was worth the effort. None of it. Not worth the effort to be kind, and helpful and put others first. Not worth the effort of trying to improve my health a fitness, when so much is working against me.

Then this morning, I ordered coffee from my favourite local coffee shop. And I got the note in the photo above, written on my cup. Such a small thing, but it honestly made my day. The more I think about it, the more I think I just simply don’t have it in me to be any different than I have always been. Constantly working on self improvement, regardless of what people around me are doing. Constantly thinking that things will be better than they are now. Constantly noticing the good things in my days, and valuing those moments. Constantly giving as much as I can to my friends and family, without hesitation. So, slightly later than I normally would have this done, its time to set some goals. To value the fact that I have grit. Of all the personality traits I have, perhaps this one is the most valuable.

I’d love to have people follow my progress, follow my goals, support my journey. One person made such a difference to my day, but it needn’t always been the same person. I am also far more than happy to be able to support other people. I’ll put my RunDownUnder details below, and my Strava, and FB pages. If you want my support, get in contact, and I will follow you on those things too. I’d be delighted.

I want to make it to Coffs Harbour  from Sydney on RunDownUnder. That will be 564 kms in a year. Double what I managed this year. I also want to go the gym without having to train with my personal trainer every time (I often need his assistance as my hands get really stiff and stuck on the bars and things). It will definitely take some Grit to work out how I will manage that. I have a few other goals, like being more patient…but haven’t yet worked out how to set a measure of this for me to achieve – being a better person is like a marathon with no finish line.

What do you want to achieve this year? Can I support you to do it?

 

My Run Down Under name is – Rina O’Connor (some people had to put a space after the apostrophe to find me)

My Strava name is Rina O’Connor

And my Facebook page is Rheumatoid Mumstar. My blog posts go here too, and I put short posts up sometimes too.

 

I look forward to supporting each other!

 

Why do I exercise even when it hurts?

I got asked this question on the weekend, after a tough park run. I had pain from the first step – in my finger of all places. Then my plantar fascia (both), then it spread to all my feet, then to my ankles, a while later my knees and finally even my hips. I limped to the 5km finish, and told my friend how tough that was, how much it hurt.

When we went for coffee, she asked me why I did it. Why didn’t I just pull out. I had to think for a bit. There are a number of reasons why I persist with exercising:

1. I hate quitting, and knew if I pulled out I would regret it later.
2. I am scared of what will happen to my body in the long term if I don’t keep it moving. The old saying “Move it or lose it”. Muscle wastage is not going to help, and neither is being unfit, or overweight. I am scared that a sedentary lifestyle, combined with RA, will disable me.
3. The most important reason of all: my mental health.

My three kids are incredibly challenging. Two are diagnosed with Autism Spectrum Disorder (ASD). One is fragile, and both sprains and breaks more easily than other children. All of them are bright, and difficult to stay a step ahead of. Add a husband who is FIFO, and rheumatoid arthritis, and my life is stressful even when its running kind of ok.

Last week, I had one sick, who spent 3 days at work with me, and 2 days with my mum. Yes, she missed a whole week of school. My husband left to go away for 10 days on Monday morning. On Monday night, my son kicked a soccer ball at my daughter, who was being the goalie. It bent her wrist back and she has a sprain that the ED said means she will be off gymnastics etc for 6 weeks. She has a strong history of fractures, so we spent Monday evening at the Emergency Department. She has been unable to help much this week, and is usually my most helpful. Unfortunately, I had just given my son a lecture about putting in some effort, and I used the words “kick the ball like you mean it”.  So of course, my kids laugh and say I am to blame for the injury. One must really be careful what one wishes for. I also thought it was pretty ironic, and had a good chuckle. I try to see the funny side of life, as often as possible.

My kids are currently being spectacularly uncooperative. And dishonest (hiding rubbish instead of putting in bin, stuff like that). Basic routines like teeth brushing are still not automatically followed after 10 years of having to do it. Likewise eating breakfast, packing some lunch for school, wearing pyjamas to bed (apparently its easier if you wear tomorrows clothes to bed, so you don’t have to get dressed in the morning – despite such incredible efficiency, they were late for school twice this week – and school doesn’t even start until 9:20am!). Anyway, you get my point. Nothing is going right at our place.

Then one had the brilliant idea to feed the dog on the brand new outdoor coffee table – without using the dog bowl. Some kibble got stuck in between the timber slats, and the dog has tried to chew it out. The table is less than a week old. The kids then told me I didn’t tell them not to feed the dog on the coffee table. Really?!

The dog water was bright blue when I checked it. Bright blue. I suspect it is from home made slime being added to it. It has been hot lately, and I kept telling the kids to check if the dogs had water. Apparently I forgot to specify that it should be drinkable.

I lost my temper and pulled out all the stuff my kids have been shoving and hiding etc, and when we went through the (VERY MANY) garbage bags this afternoon, instead of putting away the things we are keeping, my 7 year old literally stood at the top of the stairs and threw them down, and dumped the stuff that was supposed to go into her room on the hallway floor. There was  enough rubbish to fill the back of my 7 seater 4WD. And almost all of that was hidden in wardrobes, drawers, cupboards, under other toys etc.

While I was helping the kids, I decided a beer was in order. One of them put a little piece of lego in my beer, while I wasn’t watching. I’m glad I didn’t swallow it or choke on it. But seriously, they still play pranks even when they are in trouble??!

So I like to walk/run to help myself stay sane. When I arrived at park run on Saturday morning, I didn’t want to be there. I didn’t want to talk to anyone. I actively avoided making eye contact. I hated all of my own music, and skipped song after song after song. But after 5km, I was kind of ok. The hurt to my body didn’t come close to the healing in my mind.

Even so – I’d like to wish the next two weeks away. I need a bloody holiday. One that looks as peaceful as the image I featured above, which I took on a spectacular camping trip a few years ago.

 

Chocolate Cake Batter in My Ears…and why exercise is helping.

Very soon after being referred to the rheumatologist more than 2.5 years ago, he prescribed me methotrexate. I was terrified of this drug, although it is commonly prescribed as the first line of defence in attempting to slow the progress and damage of rheumatoid disease.

Methotrexate is a chemo drug, although for rheumatoid purposes it is prescribed in very significantly lower dosages. It comes with some very serious potential side effects, and require regular monitoring through blood tests, to monitor the effects on organs such as the liver and kidneys. I have been blessed with the organs of an ox, and have not had any impact on my organs as a result of the many potentially dangerous medications I take, including methotrexate.

But there are other, less serious, meaning less life threatening, side effects. I take my methotrexate on Monday nights. This is because it caused me nausea too severe to function through during the day. So I take it at night and try to sleep that off. When I first started taking it, it was on the weekend, so that I could still function during the week. Most of the time now, the nausea is gone by the morning. (I also take something that helps me sleep at night). It caused me quite painful mouth ulcers, still does occasionally, but I take folate to help with this, (this was my first experience of taking one medication to offset the effects of another – there are couple of examples of this in my repertoire now).

Amongst the many side effects, I find that the methotrexate affects my sleep. I often don’t sleep well the night I take it. I am “tired but wired”. And when I do sleep, it is fitfully, and I have a lot of vivid dreams.

Monday night, in my dreams, I was cleaning/drying my ears out with cotton buds after I showered and washed my hair. And the cotton buds were coming out of my ears coated in chocolate cake batter. This dream was so real, that in the morning it felt like a memory, not a dream. I’ve had mornings where I am cross at my husband for what he did in my dreams, because it’s so real I have trouble sorting the dream from reality in my mind!

Monday night, I slept pretty well for a methotrexate night. I don’t recall waking up during the night. I don’t recall having trouble falling asleep. And I think the answer just might lie in exercise.

I recently increased my daily prednisone to 5mg, and I plan for it to stay at that level for a while if I can convince the rheumatologist. On 5mg, I am happier, my sense of humour is stronger, I cope better (although seriously, no-one would have believed that this morning – my morning with the kids was a shocker!), I have more energy and I most definitely move more. And when I move more, I sleep better. And when I sleep better, I not only sleep through the side effects of the methotrexate, I increase my body’s ability to cope and repair etc etc. There are risks, and I am aware of them. I will be asking my rheumatologist to help me monitor and manage the risks.

Because without it, my pain and fatigue levels are so high, that I struggle to walk, let alone walk the dog. And if exercise has such an enormous impact on my mental health, my physical health, and my medication side effects, then I really do need to find a way to keep myself able to exercise.

But whichever way it works out, I also need to remember: to try to exercise as often as I can manage – whatever that exercise might look like.

 

It’s so easy to feel good, until you don’t…

I have done too much today. In fact, I did too much this whole weekend! I am proud of what I achieved. Well, what my husband and I both achieved. But it was too much. Today, we got up early, took the kids to surfing. While every one was at the beach, I did the groceries. We came home, and I went straight out to pressure clean the back patio, which was really really dirty after all the landscaping we have been doing. Then I shampooed another room of carpet. Then I put together our new outdoor furniture, which came flat packed. It was a 7 piece outdoor dining setting, and a outdoor lounge area with 2 armchairs, a 2 seater sofa and a coffee table.

I find it rewarding to be able to achieve so much in a day. I find myself thrilled that I can work at things independently like I used to. Sometimes my kids get frustrated with the things I can’t do. Once my 10 yr old son went so far as to say “I hope I get arthritis when I am old, so that I don’t have to do any jobs”. I was totally crushed, because every day, even when I can’t do as much as I used to be able to, or healthy people are able to, I always do as much as I can. I never give up, I never cop out.

When he (after being prompted by his Nana) came and apologised, I was still really devastated. And I didn’t forgive him right away. About 5 minutes later he informs me “today in scripture, we learnt about forgiveness. Maybe you should try it”. LOL, bold child that one! But it did make me laugh (on the inside) and Nana couldn’t hide her mirth.

This weekend, I have found myself finally able to contribute to the renovation of our back yard. It has already taken 4 months. It isn’t finished yet. My husband has worked on it at every available opportunity. Its the first major project that I haven’t been able to help with. I felt guilty, and like I was missing out. Working on something like this, when it is done, is so satisfying!

One of the hardest things about having rheumatoid disease is knowing your limits on the good days. When you have a good day, it’s so easy to smoothly slide into being your old productive self, and over do it. And you aren’t just tired that night. Rheumatoid Disease has introduced me to the term “activity hangover”. I can suffer heightened levels of fatigue, pain and inflammation for several days after a “busy” day. But there is no definition of busy, or active, so its often hard to tell how much is too much. There is a theory about this. The spoon theory. But I’ll save that for another time.

The transition to needing to do less is not a smooth one. I, and most of the people I have met with RD, go down fighting to keep doing. Its so easy to adjust to the good days, and never easy to adjust to the rough ones.

So, I have swollen, red sore feet and ankles. I am unable to walk without limping. Swollen, red sore hands. An aching back. And tired, so tired. I’ll go off to bed and cross my fingers that tomorrow isn’t an activity hangover day.

But before I go…..I just want to add how much easier it is to be patient when you feel ok. This is something I struggle with when I hurt. Like, struggle so badly that sometimes I find it hard to make eye contact with the neighbours! They must think I’m an awful nagging, yelling mum.

Today, the kids tried to help with dinner. They made a huge mess. And today, I am OK with thinking ahead to the end goal, of adults who can cook. I can see past the mess.

Today, I put a big box on the grass, out of my way, while I was putting furniture together. My husband moved it back down onto the concrete, and into my way. And all I did was laugh at him for not wanting a cardboard box to even temporarily disturb his lovely new turf. (Many years ago, when we bought our first home, he told me he wanted to have the best lawn in the street LOL, he hasn’t changed much).

Last night,  two of my kids went to bed after midnight, at a friends house. They were pretty tired and grumpy. But I was able to see past it. And we ended up having a good day.

Today, I let the kids make slime. I let the make a mess. Today, for once, the idea of having to clean up after them (when they inevitably didn’t manage that themselves) wasn’t overwhelming. And they LOVED it!

There are more examples. But right now, even sitting in a chair, the weight of my own feet and legs resting on the floor is hurting my feet. A lot.  So I’ll leave you all with a reminder to be grateful for the things you can do, rather than complaining that you must do them…

 

….and to wonder how, with such painful feet, I am going to get myself showered?!

 

 

 

 

9 reasons park run sucked today. 13 reasons why it didn’t.

Here’s why Park Run totally sucked today.

1. I woke up with a massive thumping headache. Not sure why.
2. Took Panadeine that hubby got from me. This made me totally nauseous.
3. Asked hubby what painkillers he got me for my headache. Turns out it was Panadeine Extra, which I had taken on an empty stomach. Hence the nausea.
4. The Panadeine Extra left me feeling a bit spacey, so I was worried about making sure I ran carefully, and didn’t end up tripping over or something stupid.
5. Forgot my chewing gum. One of the much lesser known symptoms of Rheumatoid Disease (RD) is a dry mouth and dry eyes. Google hasn’t confirmed if this is actually RD or a second autoimmune disease, called Sjogrens (pronounced showgrins). Anyway, chewing the gum stimulates saliva production, and helps when I am exercising and breathing more heavily. (There was a couple of years where I could not chew gum due to inflammation in the joints on both sides of my jaw. For 3 days once, I couldn’t open or close my mouth! But back on track…)
6. It was hot. It was humid. Very Very humid.
7. I am overweight. Very overweight. I also retain fluid. Add the heat and humidity and I was seriously uncomfortable – by the end, one of my hands was so swollen, I couldn’t make a fist. My feet also swelled, and this increased the foot pain when running.
8. I went to the personal trainer twice this week (usually only once). He put my weights up on Thursday.  Muscles were not thrilled.
9. The wind. Our course is laps, so the wind was only an issue in one direction. But that direction was the one the included running up hill. Oh. My. God. Dying.

But here are the reasons why Park Run was totally awesome today.

1. The first female today with a course record ran it in 18:30. And it was stunning to watch! Just incredible. If I didn’t go, I wouldn’t have got to see that! And she was not only the first female, but she was first runner!
2. I met someone wearing an RMA shirt today. She has run 146 park runs! Inspiring! I wasn’t brave enough to tell her that I am also a running mum. Although I look like a mum. So maybe she could tell.
3. I finished. Even if I had to walk a fair bit. I never gave up, and never stopped trying to run a bit more. I think its much easier to run if you feel good. To keep trying when you don’t, when it is all harder than you had expected – that’s tough. That’s the power that lies within.
4. I felt proud of myself.  For a long time, it started some time after I got sick, I wanted people to acknowledge my efforts. Today I acknowledged them myself. That’s a winning moment, right there.
5. My time didn’t suck as bad as that run felt. It wasn’t a PB. But it wasn’t the major set back it felt like at the time. Not every run is going to be your best one. So that’s a good result I’d say.
6. The wind. A tail wind, down hill. That’s awesome!
7. My headache disappeared, and did not return all day! I credit the run with that for sure.
8. My husband, who finished much more quickly than I did, came and helped me with the last few hundred metres. He’s never done that before. And he complimented me  on my running, without my asking. He doesn’t do that much either. (A man of few words, is my husband).
9. My 7 year old daughter, who played in the park with her friends while we ran, brought my drink bottle to me a few times as I ran by. And she didn’t even complain about it.
10. My park run photo, In it, you can actually tell I am running as opposed to walking briskly (well I think so anyway).
11. The wind meant that having a chat at the finish was not interrupted by midgies.
12. Having a chat at the finish line is awesome. Park run really makes me feel connected, and like I am a part of something. It has such an incredibly supportive culture. The Rheumatoid Disease, as I am presently, means that team sports are not an option. My other hobbies, like reading, are all solitary.
13. My husband, daughter and I grabbed a cuppa and drank it on the headland. It was the most peaceful few minutes of my day, and might need to become my new weekly post park run habit!

Park Run, even when it’s hard, is one of the highlights of my week. 

Getting myself back a bit….with running and clean carpet.

The last couple of weeks have been pretty big for me. Always in my life, I have done as much as I can every day. Having Rheumatoid Disease (arthritis) hasn’t changed that, but it has definitely limited how much I can get done in a day.

About 7 years ago, I was running about 40km per week, I had 3 kids under 5, and my husband was away getting himself a 2nd trade. He was away for a month at a time, several times a year. I had no family support, I had plenty of friends, I was a stay at home mum, I hadn’t slept through the night for about 7-8 years. And It was the BEST. YEAR. OF. MY. LIFE. EVER.

I was independent, and I was capable, and I was fit and energetic. Tired? Probably yes. But soooooo happy. If the lawn needed mowing, I mowed it. If a light bulb needed changing, I changed it. If the concrete needed pressure cleaning, I pressure cleaned it. My husband would come home to discover I had rearranged the house, including moving the furniture – on my own. Whilst caring for the kids. I was the me I had worked my whole life to become – not the one I set out to become, as I never knew until I had the kids that being a stay at home mum was in my plan. But it worked out just they way it should. Content and happy.

About 3.5 year ago, I was still a stay at home mum. I was studying a Masters degree. I had 2 kids in school, and one always home. I had 2 kids diagnosed with Autism. I was living with and caring for my grandmother. I wasn’t running much. I was tired all the time. I hurt often, I had a unknown wrist injury that simply wouldn’t heal, and I woke up every morning stiff like a person more than twice my age. My husband was now officially a FIFO (Fly in Fly out) husband. I was living near family. Every week, life felt a bit harder. It got harder, and harder.

It got so hard, I had to sleep on my stomach at night, with my hands pressed flat against the mattress, underneath my pillow. If I didn’t, I couldn’t open them in the morning. I woke up with claws for hands, and since I was already walking stiff and crab like, we couldn’t be having that LOL. I couldn’t clap my hands when my kids got an award because it hurt too much. I struggled to tolerate the pain of holding my youngest child’s hand to cross the road. She was kind of thrilled, as she is fiercely independent – when it suits her. I struggled to walk any more than about 100m. I hurt all over. I had to have a lay down after I made the school lunches. I had to have about 6 -10 lay downs per day to get through doing anything. I had a 2-3 hour nap every day while my youngest played on her iPad on the bed next to me. I could barely get out of a chair, let alone get off the floor if I sat down to play with the kids. We took to referring to me as “Poor Old Mum”. And I firmly believed that one of the worst things in my life was having children that still couldn’t tie their shoelaces. Doing it for them was a monumental effort. And then doing it again, and again, and again within the space of 5 minutes because the socks didn’t feel right was borderline torture!

Over the last 3 or so years, I have added medication after medication, til I now take about 30 tablets a day. My insides rattle. I struggle to eat breakfast because I think I am already full from the tablets. And I’m so much better than I was. I am exercising. I am cooking. I can walk the dog, although not every day. Its been a very up and down few years, as we try to work out the minimum medication I can take without losing my ability to function.

Today, I got out of bed at 5:30am. I did the ironing (if I didn’t, I might have had to go to work either naked or wrinkled LOL). I was at work by 7:30am. I started early so I could fit a meeting with a teacher in at school, followed by watching my youngest (now 7) perform Xmas songs in the school assembly. She was an adorable ukulele playing Christmas tree. I went back to work, and came home about 4:15pm. And then I cleaned the carpets with a cheap as chips bargain carpet cleaner I bought. I spent about 2.5 hours on the lounge room (and that was my second go over it). (My husband has been landscaping, for the last 3 months. He has finally layed the turf, so the dogs are no longer spending the day in dirt, with the dirt then falling off their teflon coats to leave dog size brown patches on our pale green carpets!)

And although my hands and feet are are hurting, and I’m very very tired, I have clean carpet. And I cleaned it myself. And I will sleep tonight, and make it to park run in the morning (that’s a 5km times run, in case you haven’t heard of it – its spreading throughout the world, you should find your nearest one and get involved!). And I’ll probably come about 3rd last. But I’ll love it because I can do it. And even though I used to do way more than this every day, I’m so excited to have a little bit of myself back. And clean carpets. (Did I say that already? I really am pretty excited about that). Tomorrow I’ll attack the dining room. Its even worse than the lounge room – can’t decide if I’m mortified at its current state, or really excited to fix it tomorrow. Probably the latter. Theres definitely something more than just Rheumatoid Disease wrong with me LOL.

So, now that you have read this – off you go and find your local park run. It will change your life.