Planning a social life

Yesterday I went walking with my friend G. It was a beautiful day and we enjoyed a lovely couple of hours walking through bush with views over the sea. At the conclusion of our walk we went to a cafe for lunch and shared a slightly geographically confused but very tasty paella and pizza.

Like me, G lives alone and also has RA. We both acknowledge the need for regular exercise so we make an effort to get together and walk somewhere every few weeks, because walking is a good way to catch up without dealing with noisy cafes or bars.

I know these catch ups are important to him. He’s told me how he makes a real effort to plan his weekends to ensure he has social contact and doesn’t just sit around his flat feeling sorry for himself. I suspect he has a much greater need for social engagement than do I, do I think it’s very self aware of him to be so proactive about organising his time so he makes sure he gets the level of interaction he needs to keep well.

It occurred to me that this is the very issue I face, but I’m not as disciplined as he is. My issue is how to say no to engagements so I get the solitary time I need for good mental well-being.

People think it’s hard to reach out to others to ask for help, and it is. Asking for company can sometimes feel needy rather than an act of sharing. But it’s very difficult to refuse when someone offers to share their company with you. I feel rude and ungrateful and I suspect I always will. But I’m still going to say no.

Taking things as they come

I thought I was getting the hang of pacing myself, but RA has a way of constantly reminding me that it’s really in charge. I had major pain in my hips and ended up in bed for three days, with pain and overwhelming fatigue. 

That passed as inexplicably as it arrived. I woke, the pain had dulled to a faint presence, and I had enough energy to get up, showered, dressed and out the door. Sometimes that is an achievement.  

Three days later, a beautiful sunny day and my friend Geoff invited me to go walking. Geoff has RA too so some portion of our walk is consumed with conversation about drugs, side effects, and our latest symptoms. 

I wasn’t sure how much I could manage, but we picked a place with multiple routes of varying lengths to allow us to turn back at any time. 

So we set off. Eleven km later we were back at the car. 

Today I’m pretty sore and tired, as to be expected. I’m also feeling really pleased that I could do that distance. I just wish I knew why one day I’m flat on my back and the next I’m hiking the hills. It makes no sense. There’s no rhyme or reason, and that’s the hardest part about living with this disease. 

I just have to learn to take it as it comes. 

Learning to pace myself

I am still learning how to pace myself under the changes to health and lifestyle that RA brings. I keep trying to do what I did before, and I simply cannot. I pay the price one way or another – pain, fatigue, infection, or if I’m particularly unlucky, all three. 

I have a tendency to try to do everything when I’m feeling good, taking advantage of the times when I do have energy. This backfires, unsurprisingly. I haven’t yet reliably identified that zone between “enough” and “too much” – the zone where I can push my boundaries just enough to stretch them but not break them. 

But I’m starting to learn and make better calls. I decided to make this a “personal” long weekend because, even though we just had one last week for Easter, I felt very tired all week and knew I was headed for a crash. But I didn’t want to sit around for four days feeling tired and pathetic. That wasn’t going to help me recuperate and restore my depleted batteries. 

I had been invited on a day hike on Saturday. Ordinarily this would have been a great plan, but I didn’t sleep well, was worn out from the work week, and woke feeling very lethargic. I briefly argued with myself about going – would it be good for me or too much? I decided it would be too much and cancelled. I’ve gradually learned to distinguish between the kind of tired that benefits from a walk, and the fatigue that is exacerbated by exercise. This was the latter. 

I was inclined to lie on the couch and watch TV but I know that when I’m exhausted, this does nothing for my mental state and consequently has no positive impact on my fatigue. So I opted for sketching. I found a photo on Google of Amsterdam’s canal houses, and spent about an hour drawing them. And I felt pretty darn good when I was done. Good enough that after a decent long sleep I called my friend on Sunday morning about that hike and off we went. 
Now I’m back home resting and feeling tired in that good way, when your body has done something to justify the fatigue you feel. 

I made the right call not to go hiking on Saturday even though the weather was glorious. I made the right call to sketch rather than passively sit in front of Netflix. Both those choices helped recharge me. Perhaps because I know I can spend tomorrow in bed, I was willing to push the walking today, but I did feel less exhausted this morning and more up for exercise. It wasn’t a great distance – about 5km – but it involved sun, fresh air, beautiful scenery and good company. 

I’ve never been very good at paying attention to how my body feels. RA has forced me to pay attention, and not just to what hurts. As a result I’m getting better at recognising what my body can tolerate, which is frequently quite different from what my mind thinks I should do. Pacing myself seems to be, at least in part, about learning to shut off the “should” voice and trust that my body is telling me the truth. 

 

A new adventure begins

I got the land. I am now the proud owner of 23ha (55 acres) of prime grazing land facing north (sun – I’m in the Southern Hemisphere ) with a view of the river valley and the mountains behind. 

I’m a bit stunned, to be honest. Not quite buyers remorse, but I’ve been having some moments of terror of the “what was I thinking?” variety. Because this is a slightly mad adventure to be embarking on. Mind you, all the best adventures are mad. 

Twenty three hectares is a lot of land. It’s not farm sized, but it’s way bigger than lifestyle block. How on earth am I going to manage it all? On my own?

Tackling something like this would be an ambitious plan for a strong, healthy couple. For a single woman with rheumatoid arthritis, it doesn’t seem like a very sensible course of action. It’s going to take work, lots of it, and time and energy, and it’s that last one I’m most concerned about because it’s been in short supply. 

On the other hand, I’m really excited about this and I feel energised thinking about it, and it’s been a while since I felt that way about anything. In practical terms, the one thing I have on my side is time, so I can learn to pace myself with physical work. I am hoping that regular not-too-physical physical work, or not too much of it in a day, might in fact help with my RA and with my energy. Being enthusiastic counts for a lot. 

Farming neighbours are generally very willing to help out with local knowledge and advice. I know that my new neighbours will steer me in the right direction and of course there will always be people available who I can hire to help with things I can’t do on my own. So although I’m doing this alone, I can choose how alone I want to be. 

My procedure outcome was good news in disguise: they found nothing so I don’t know what’s causing the troubles, but it’s nothing big and obviously serious, so that counts as a win in my book. 

It’s been a pretty stressful week and it was hectic at work. And instead of recovering on my couch, I’m reuniting with old friends and doing a very easy tramping trip into the mountains. The fact I even said yes to this is an indication of just how energising the land purchase has been. 

Amazing how different life can look at the end of a week. 

Coming into focus

I’m not a fan of the “if you can dream it you can do it” school of personal development. It’s always seemed simplistic, not to mention it completely ignores the role of privilege in identifying our dreams.

However, occasoinally I am forced to admit there is something to it. Perhaps most obviously, dreaming about something puts it on your radar, and once something is on your radar you notice it, pay attention to it, and possibly quite unconsciously take steps to put more of whatever it is into your life. So it’s not that mystical, and quantum physics needed get involved: it’s just basic psychology. Thinking about buying a Honda? Suddenly you see Hondas everywhere. And it’s not because the universe has organised itself to show you more Hondas.

This week, I’ve been talking to real estate agents and lawyers about buying a block of land – 23ha (about 55 acres) of grazing farmland to be specific. This has come about because of a conversation I had with my nephew about his butchery business and the cost per head of transporting cattle to the butchery. In short, having land nearby to hold the cattle until ready for butchering would be a Good Idea. So now I find myself on the brink (I hope) of purchasing said land.

This has triggered a whole bunch of flow-on ideas – building a house, building a cottage to rent out for weekend stays, having beehives, growing avocados, going off grid, renting out my city home, and yes, retiring sooner because of all this.

In between getting ahead of myself with the plans,  I looked back through an old notebook and found that in 2015 I had written down a Life Goal that I wanted to retire on a block of land where I could build an off-grid house and have a cottage to rent out. I had completely forgotten I’d spelled this out back then. It had seemed like a highly improbable goal (or as Martha Beck calls them, a “Wildly Improbable Goal” or WIG) because I didn’t think I could afford to retire any time soon, and I couldn’t figure out how to get the isolation I wanted without having a whole bunch of land to manage. I have very little idea about how to manage a large chunk of productive land. Turns out I don’t need to: that’s what leasing is for.

In rather short order all these ideas seem to have come into focus and coalesced in a rather unexpected way. I am excited, to be sure, but I also have this strange-but-good feeling of being a bit removed from it. I’m doing my work to make it happen – lawyer, accountant, real estate agent etc – but I’m not pursuing it aggressively and feeling that sense of desperation to have it all work out. In other words, I’m going with the flow. The last time I did that was when I was buying my current house, and it’s been my happiest home.

The only fly in this ointment is my body. Last night I had the worst night to date with rheumatoid arthritis pain. I was sobbing from the pain in my hips and unable to find any way to relieve it .(Eventually I got some relief from medications but it took a long time to kick in). This worried me because I thought, how am I going to cope living on farmland and being relatively isolated if my body does this? It is a concern, to be sure. But it’s not enough to stop me from keeping going with this land purchase and maybe, just maybe, having my Wildly Improbable Goal come to fruition.

 

Ending the week on a flat battery

Ever had that experience of coming home from a lovely relaxing holiday and being tipped immediately back into your pre-holiday life without time to catch your breath? That was me this week. 

I had to travel to run a workshop, a stressful one at that (senior people, poorly defined outcomes, high expectations); and the rest of the week was just one thing after another. 

Sunday morning arrived and I hit the wall. I couldn’t get going, then realised there was no need to. So I stayed in bed. 

It’s hard to describe this kind of fatigue. Very familiar to rheumatoid arthritis sufferers, it is a different beast altogether from “feeling tired”. When I’m tired, I sleep and I feel fine when I wake up. When I’m fatigued, getting out of bed to go to the bathroom takes a huge effort and thank goodness I can sit down once I get there. Fatigue is more like the tiredness you feel when you’ve got the flu: you know one night’s sleep isn’t going to fix it, it’s settled into your whole body, and you’re just going to have to stay in bed because anything else is an impossibility. 

The difference is that I don’t have the flu, and when I get up tomorrow I’ll feel like I’m coming down with the flu instead of having a full blown case. This will feel like an improvement. But it’ll be compounded by the weekly dose of methotrexate, a particularly nasty but effective drug whose side effects include fatigue (yes, more), nausea, and the infamous brain fog that leaves you feeling a day late and a dollar short. 

By Wednesday I might be feeling a bit perkier. Who knows, next weekend I might get to spend both Saturday and Sunday out of bed. It’s a good thing I’m comfortable with spending the vast majority of my time alone since fatigue is not much of a spectator sport. 

Feeling my vulnerability

I fell this morning. Writing that makes me feel and sound like an 80 year old (I’m 54). Fortunately I didn’t hurt myself, but it gave me a fright.

Yesterday I felt pretty good so I cleaned, washed the windows, and baked. That doesn’t sound like ‘too much’ but last night I slept badly, woke several times from pain in my hips, and the fatigue truck rode right over me. I just couldn’t muster the energy to get out of bed this morning.

When I finally did, I could feel that I was unsteady on my feet. Sometimes this happens when I am stiff in the mornings from the rheumatoid arthritis, and since my hips had been painful all night they weren’t moving very freely. Somehow I hit my shin against the bed at the same time as losing my balance. I managed to twist myself so I fell onto the bed and had a soft landing. I didn’t trip, I simply couldn’t balance, and realised I couldn’t stop my fall. My reactions didn’t seem to work.

I have wooden floors and steep stairs. Had I fallen onto the floor I would have hit my head and probably done damage to wrists, arms or shoulders trying to break my fall. If I fell on the stairs, the possibilities are more scary.

It could have been very different. It gave me a fright. I don’t generally feel vulnerable or fragile, and I perhaps underestimate the impact of this disease on my life and on my ability to take care of myself. Generally I am of the opinion that my symptoms aren’t that disabling – I don’t have the excruciating pain that some people have in their hands that renders them unusable. This morning was the first time I’d felt vulnerable to the effects of the disease in this way.

I don’t like it. Not one bit. I don’t want to start tip-toeing through my life for fear of falling (although, in that somewhat mixed metaphor, tip-toeing might very well be the cause of falling).

Perhaps I need to stop underestimating the impact of this disease and pay more attention when my body is stiff and sore. I knew when I got up that I was very stiff. I should have paid close attention to where I was putting my feet, and not tried to move as if everything was fine. Because pretending things are fine when they aren’t may well make things un-ignorably not fine.

Recovering from being social

Two weeks ago I attended the wedding, and while I enjoyed it very much it also involved what is now for me a very late night: 11pm. The following day I decided to go for a hike with a friend as the weather was stunning, walking is good for me, and my friend has RA too so we could compare notes and commiserate while enjoying the views and the day. We ended up walking about 6km which isn’t a huge distance. 

Apparently this was all too much for me. It set off a flare of symptoms that saw me in bed for three days. On day 2 I almost fainted after getting out of the shower and had to lie on the bathroom floor for about 15 minutes before I could crawl, literally, back to bed. I also ran low on food because I hadn’t shopped for groceries over the weekend, being too busy dollying myself up for the wedding, and hiking. 

This was all rather demoralising. I obviously felt good enough after the wedding to entertain the idea of a hike, and although the hike was fairly strenuous I didn’t think I’d pushed myself too much. My body disagreed. 

I have very little resilience it seems. I do recover eventually but I’m inclined to think three days in bed is a very high price to pay for having a mildly active weekend. 

So I’m having a much quieter weekend. I’ve done my grocery shopping because being confined to bed is even less fun when you’re hungry. The most strenuous that things are going to get is wrestling the duvet into a clean cover, which I can then have a nap on. 

Turns out I’m depressed. Now what?

I was referred by our welfare officer to a psychiatrist and she fairly quickly assessed depression as the culprit in my enduring and debilitating fatigue. Although she didn’t say it (I did), I’ve been using the rheumatoid arthritis as an excuse and failing to acknowledge the other things causing me grief. Literally. 

We talked about the death of my sister, although we were unable to come up with a term for grief you don’t feel entitled to be feeling because you didn’t like the person who died. [I’m sure there is a language somewhere in the world that has a word for this.] Then there’s the anger about what that relationship took from me, in all sorts of ways. There’s a lot I’m reluctant to lift the lid on there. 

Curiously, recognising this as depression is a relief. It’s not RA that’s ruining my life after all! Depression I know about: I’ve had it before, lived with it, come out the other side. I pretty much know what I have to do from here. It’s tough, don’t get me wrong. It’s not an easy thing to get control of and it’s a long hard road back to health. But it’s not the same fear of the unknown that RA is. With depression, even with its mind-numbing hopelessness and insistence on the futility of everything, there’s a part of my brain that knows it’s lying about all that and that things can, and do, get better. 

With RA, I’ve got no idea what comes next. As anyone with it will tell you, past activity is no predictor and it’s infuriatingly random. That in itself can be really trying because it seems like nothing you do makes any sensible difference. 

At least with depression I know what works:

1. Eat properly. Fruit and veg, 5-9 servings a day. Minimal refined carbs, no alcohol, restrict caffeine
2. Exercise. Get out every day. Walk, run, whatever, just move. 
3. Do things I enjoy. At least one thing every day. 

I know from past experience to start doing these in order beginning with eating because that more than anything affects my brain. I’ve been doing okay on food, so I don’t need to cut out bad things  (alcohol, sugar, caffeine) so much as add in the good (veg & fruit, and lots of it). 

Once I’ve got good food in me, exercise becomes a more thinkable and doable proposition. While I’m keen to get back to running I need to be very careful about easing back in with walking first because the last thing I need is a setback from injury. 

The one I find hardest is 3, finding things that give me joy because of course one of the hallmarks of depression is the absence of joy. So starting very, very small is my plan – like using the ‘fancy’ shower gel instead of saving it for best, (whatever the hell “best” means in the context of shower gels.)

So we’ll see how I go. There are times when I think living alone poses particular challenges and this is one of those times. Because it’s all down to me. There’s no one there to force me to eat my veg or make me go for a walk. 

The only person who is going to make this happen is me. And I can’t be relied on because I’m depressed and can’t be bothered. 

Drifting dangerously close to breaking point

Not really. I just feel like it sometimes.

Because some people in our organisation deal routinely with unpleasant and distressing material and events, we have good support systems in place for staff.

I have been grateful for them recently.

I realised I am approaching breaking point. Some of the behaviours that signal trouble for me include:

• mindless surfing and playing on my phone until late at night when I should be sleeping
• not bothering to prepare food, especially skipping breakfast
• eating lunch very late or not at all
• getting no exercise
• being tempted by the idea of being hit by a bus so I can have a nice long rest in hospital
• dreading waking up, and waking later and later

All of these have been happening. What’s not clear is what is driving the stress. My job has its frustrations, to be sure, but on its own is not so stressful it would be causing this kind of behaviour.

The fatigue of rheumatoid arthritis is a major factor. I feel so exhausted most of the time that attending to even the basics of living  (showering, dressing, getting to work) are taxing my energy. By the time I have dealt with work and its inevitable pressures, it’s not surprising I am showing the strain.

So I took myself off to the Welfare Officer to see what can be done. She’s referred me on, so I’m booked in to see someone next week to discuss what my options are. I’d like to reduce my hours, but I know my boss is oddly reluctant to consider this (I say ‘oddly’ as she has been extremely supportive and understanding of my need for rest). Working from home would be one option but for boringly tedious corporate reasons, that is difficult to organise at the moment (you’d think you could just go buy a laptop and make it happen, but no.)

I don’t want to quit my job, as I enjoy it most of the time, and I’m very uncertain about what would happen if I stopped work (financially, mentally, socially). I’d like to find a happy solution. The challenge is that solutions take work, and work takes energy, and I have so little energy left after brushing my teeth that it seems like an impossible task. And yet, it could make all the difference.

It’s like the poverty trap: if you could just save a bit to get ahead of the bills you could change the whole dynamic, but you don’t have enough to get ahead. So the situation gets worse and worse. I do need to intervene to break this cycle before it breaks me.