I am a pretty upbeat, positive person and not effected by seasonal blues but the “blahs” are hitting hard right now. The many things that have brought me joy like hunting, hiking and fishing are now overwhelming “chores” like I should get out and do them. I have accumulated all the equipment and it just sits there and I sit here wishing I was out doing the things that I loved but can’t get up the drive to just do it. Now I’m suffering from “arse-ritis”! (sitting on my ass talking about doing but never going) Last year by this time, I had already cut 2 chords of wood for our main heating source and now I don’t feel like putting gas in the chainsaw. When I rally and have a short burst of energy, I pay for it in flares. And to make it all worse, I struggle with guilt that I can’t get going and think I am just being lazy. I think that accumulated pain is taking its toll right now…everything just seems like so much work! Sorry for the dumping…but life without zip is like decaf coffee in the morning!
I hear you - sitting here with my (caffeinated) coffee this morning watching snow fall - after a rough night’s sleep - pain levels high, eye headache, etc. Original plans were to go swimming, now a short walk and sitting in the hot tub looks like the revised plan…and some stretching in there somewhere.
No more running, step aerobics, heavy weight training, maybe even spin classes - l stare at that equipment sitting there. After instructing fitness for 20+ years, these days I only teach older seniors with health issues mobility orientated water fitness…and I can really relate to a lot of their issues and pain at 52 ! Now it’s the world of wrist braces, salon pas, good shoes, heating pads, and fingerless gloves.
I miss summer me - cycling, the lakes, paddle boarding…this too shall pass ? Forgive the guilt - it is what it is, we do what we need to do, even if it’s not what we really want to do.
I’m going to simply say - reset the goals. I am the best I’ve ever been on present PsA meds but there is still no way I could now do all I used to do before PsA hit on a physical basis anyway. But there’s other things I can do and do do instead, if that makes sense.
I used to have a magnificent garden, and I grew all sorts of vegetables and fruit, and grew alot of plants from seed too, tomorrow some contractors are coming in to rip out two huge completely overgrown flower beds, now full of nettles and brambles and we’re going to lay it to grass and indeed I’m going to plant some trees there instead. Fast growing trees as I’m anyway impatient and also I’ll indulge some planting of things in pots instead of flower beds. I’m looking forward to the green calmness it will create. I’m looking forward to seeing something that doesn’t scream, ‘you can’t do this anymore’ too. I can forsee these contractors will be coming back for some other projects too.
Whereas before I would be mucking out farm animals for fun, these days my spare time is spent helping other people access the medical care they need by drafting letters and researching regulations for them all on a voluntary basis and I paint pictures from numbers too. I get people’s photographs turned in to these kits and I paint them for them. A woman in a local village is mad about all things steam trains and one of those engines came through the village last weekend and she managed to take a magnificent photograph of it, and soon I’ll get to paint it for her. I’ve never met her, don’t know her from Adam but saw her photo posted on our local FB page and asked could I paint it. She’s thrilled about that.
These kinds of things keep me involved and active in a way but none of them require the shedloads of physical activity of the sort I used to do. However I can still walk my dog. He’s happier I do it a bit faster these days too and for longer. That’s good enough for me.
So reset the goals. It’s eye opening - really it is.
What can I say here?..OUCH, that’s a bit close to home.
Let me explain. I used to be quite ‘handy’ and over the years built my workshop up with all sorts of bits’n’pieces of tools and plans for projects, but similarly to you, knowing that that burst of energy needed has consequences, so I don’t and then (metaphorically) beating myself up for being a lazy sod.
As for the firewood, hmmm, last year I went out and bought me a decent chainsaw. Then ended up calling a friend to bring me out a couple of ton, chopped and in a trailer Tsk. (see!! just lazy) The way I justify it is ‘pay in dollars or pay in agony’. Dollars cost less.
So Amos, I can assure you, you’re not alone. Finding that balance, yea, good luck with that. I still beat myself up, trying to find a balance. Some days that acceptance is easy, some days it’s a battle.
Merl from the Modsupport Team
Amos, I must admit I’ve got that happening now too. The infliximab has gotten lots of things at least partly under control, but not the severe fatigue. I wake exhausted in the morning, after sleeping for at least 8 hours.
And I’m not even getting what I need to get done to just tick along. Work, care for my daughter, cooking meals (have admitted defeat and will order some healthy online ones for next week). All gardening has been on hold for months, my dog is going to disappear next time she steps into the lawn it is getting so long!
Unfortunately I got the predictable NFI from the Rheumy today, though @tntlamb youll be happy to hear he asked me had I heard of Behcets . I walked out with a form for not less than 17 different urine and blood tests. Well at least he is doing his darndest to figure out what I might have!
Meanwhile, it’s hard not to beat myself up about it, particularly when the Remicade is improving things a lot, but I don’t really feel like my function has improved too much, it is tempting to think it’s all in my head, because sometimes it is easier to blame me, than admit I have so little control over things. Sigh. When these irrational thoughts come (me telling myself I’m lazy - because it’s truly ridiculous), I realise that’s me teetering on the edge of depression. I’ve got to order those meals and get a mower man - I probably can’t pay for either long term, but I’m going to hope this will get better. I need to do some recreational things that don’t require an achievement or outcome, because I’m not managing either at the moment. Years ago when I did a structured course for depression, I was surprised to find there was almost nothing I did like that. I tried to remember what I did as a kid. I added back in book reading, watching a good TV show, and actually I’m going to go back to my notes and see what else. It’s been some time since I’ve sat and read recreationally with no purpose!
All of your encouragement and sharing how you too have some of the struggles with loss of activity are very good for me to hear. I admire the mindset that you are at @Poo_therapy, I’m still at the stubborn and a bit mad stage. Pride really pushes me to try and prove that the old me is still there. I really want to conquer PsA in some way other than acceptance. So…I serviced my favorite chainsaw and cut down a 40 foot high dead Oak tree in the yard yesterday…just to teach it a lesson and stop it from mocking me. I bucked it up and stared at it like I just won a fight. So what did I learn? Not much…I couldn’t sleep very well cuz my upper body aches, new and worse pain in my shoulders. Now every piece of the tree is laughing at me so someday, I will clean it up and get it in the shed. (Likely beat on it with an axe for a while) But today, I will drink strong coffee and take Extra strength Tylenol. Oh, I did learn a few things: 1. I’m still stubborn, 2. My agility is gone for chit, 3. My chainsaw has gained 50 pounds due to inactivity 4. You folks are really good to talk to! Thanks for understanding.
I think that we are all wired to feel good about accomplishing things and attribute self worth to the things that we do. And, buying tools and things like chainsaws bring a certain hope of getting back to some things that we loved to do. For me, I never pictured myself at 61 trying to keep up with my father in law who is 85. That really ticks me off. Acceptance, like you buying wood cut, split and delivered is a “poke” to me that loss is a reality…and I have to deal with it. Thanks
I just received a call from my rheumatologist office with the results of the MRI on both knees last week. He started with, “unfortunately…”. The cartilage on the inside of both knees is quote, “Every reason for me to have a lot of pain”. The cartilage is full of tears. The radiologist compared to my MRI 3 years ago and none of this existed in this manner at that time. Because structural things like this are not in the scope of a rheumatologist, he has referred me to a very experienced orthopaedic surgeon for further evaluation. That consult will likely be 3-6 months from now. Rheumy said that my knees are in very good shape, very little OA but the damage is extensive cartilage and doesn’t do a lot of healing at this age. Surgery may clean things up but can’t fix what is. So….I have just had a first hand lesson on the reality that PsA is indeed progressive. Now I need to know what I need to avoid in order to maintain mobility as long as possible. This is a real mental game changer for me as “pushing thorough the pain” is not a good option. For those still contemplating biologics…JUST DO IT! The earlier that you put the brakes on this disease, the better!
Amos, I do understand what you are going through. I just turned 40 and I see my other 40 year old counterparts running, driving their kids to activities, going out to dinners, cruises, energy, energy, energy. Then there is me. My pain is mostly managed these days but my energy comes and goes. I do well enough to get my 11 year old son to his few activities and homeschool him. After minimal house chores I am done. Like @Poo_therapy I wanted to be a master gardener. I used to grow everything under the sun. Now I look at my new backyard (well 3 years old) and I havent put in a garden at all. I used to own a greeting card company where I worked 60 hours a week, art markets, traveling to conferences, meeting clients, taught classes about gardening to kids, lead a homeschool hiking club, so many things. Now I can’t clean my bathrooms most weeks.
So we changed my goals and focus. I do not lead groups anymore but I will take my son to activities, I dont teach anymore but I will help out, I do hike but shorter trails and I have a hiking stick, we also RV so I can travel and see the country but I have everything I need inside to stay comfortable. I also use aeroponic tower gardens to grow vegetables. Its much easier and requires WAY less work on my part. Refocusing my energy has made me very happy and I dont have as much guilt as I used to.
I hope you are able to find a new focus. Just one small thing.
Split wood is a sore subject with me. Family tradition on Thanksgiving morning is to pull down one or so of our dead falls cut it and spilt it. It’s a competition. Normally get a good five cords out of the deal between grand blessings sons, son in law etc our version of a football game. Trouble is this year we moved the whole show up to the lake. (MIL is hospice) We’ll do a polar plunge instead but my biggest fear is the “team” will figure out I have been scamming them for years to get my winter wood supply… The 13 year old is po’d so there is hope. He was to have his own ATV this year and got to use a chain saw…
Amos, I always appreciate your posts. Positive, and insightful. The replies to your original post are excellent as well. People stating their experience but offering good advice. I am of no help here, sorry. Right now my psa doesn’t stop me from doing anything, BUT I still sit on my arse most of the day! So you have encouraged me to get active and do things while I can. Thank you for that and I sincerely hope you get the results you need and like one reply says, I guess we have to reset our goals or find the new or varied things to make our days enjoyable, way better than “not” being here!
Hear hear. The cartilage inside your knees got chewed up! Hoooo-weeee, just when we were thinking that PsA attacks joint surfaces and ligaments.
The trouble with this disease is that it is insidious: we have a few good weeks and we’re keeping it at bay just fine! We manage to make it through the day and think “yeah, I think I’ll stick to ibuprofen, that seems good enough for me”. Life goes on like that until we go through a bad spell, and when that doesn’t get better, someone decides to investigate and … OMG … there’s damage. Bad damage.
Drs Chandran and Gladman from the clinic at Toronto Western have preached “early and aggressive” for a long time. Unfortunately I know too many people who, for one reason or several, were diagnosed late, were treated for mild disease, or who decided to tough it out because … well, because the could. And those people are often the ones who wake up one day to find their joints wrecked.
Chin up Amos, my friend! Have you tried bracing those knees? Works for some, but not for others.
The first two sets of braces that I made from a red oak tree always clacked against each other when I would run and were too noisy…I couldn’t sneak up on the deer when hunting! I had a custom brace made but really didn’t find any help from it. But who knows what the new orthopaedic guy has to say.
Wow. I’ve been away for awhile. I usually take one day at a time but lately several days have attacked at once!
Amos, you are unfortunately preaching to the choir. I think it’s finally sunk in that I am not going to be a house afire again. (Body parts perhaps but that’s different ) “Pace yourself” and “pick your battles” are two pieces of advice I give myself daily. Poo has it right, we have to reset our goals.
I can not spend 8 hours in the garden now. So I must stop and listen to weeds mocking me. Silly things don’t know I’m the Undesirable Plant Terminator and “I’ll be back.” Later. I shall not be laying any more paving stones and tree pruning is on the terminal list. I have learned to live with a bit more dust in the house and I’ve finally realized that no one is going to die if my bathrooms aren’t sparkling squeaky all the time. Nor has anyone ever died of oven crud poisoning. Sometimes meals are hamburger patties, steamed broccoli and microwaved potatoes because my sacrum is calling me names that would make a sailor blush and that’s all the cooking I can manage.
But I’m not yet totally out of piss and vinegar so I shall reinvent myself where reinvention is needed. Fortunately my interests are varied and I’m easily amused. I still find joy in sewing, for shorter periods of time. And cooking, ditto the time. And making jewelry, also ditto the time thing. We just finished packing 220 Christmas Child boxes. Over 3 weeks. (Remember, pace yourself you silly woman!) It is very tempting to feel useless or at least used up. But our worth is not in what we do. It is in what we are. And who we are. I am not the sum of my actives. And nor are you. I am just hard headed enough to figure out a way to conquer just about anything. Even if it kills me. And I think that may not necessarily be a good trait. Some things are best left unconquered. Not because it will kills us but because it makes us hurt SO BAD that it really wasn’t worth it after all. It was simply the wrong battle to pick
I began learning ‘pace yourself’ back when I had cancer and chemo was SO MUCH FUN. Don’t ask me how but I managed to work my 8 hr job the entire time, except for 2 major surgeries and infusion days. Mind numbing fatigue, chemo brain, freezing all the time, itching all over, peripheral neuropathy, insomnia, etc and the only way I made it was a 15 min power nap at lunch. Talk about feeling useless! But the lesson of prioritize and pace yourself took hold. Good thing too ‘cause I’ve never been the same since. Not complaining. I really like my life but I wouldn’t if I couldn’t make peace with the new normal. I am still a person of worth even if I can no longer work 12 hours in a commercial greenhouse. Or hang Sheetrock. Or even open the ever loving pickle jar! Grrr
And you my friend are no less the man that you were. You are funny as heck, I’ll wager piss and vinegary too. And THAT is worth quite a bit!
And it is. Hence often resetting goals becomes necessary too.
Those garden people of mine came in yesterday, 4 young guys, oodles of youth, energy, fitness and machinery and this morning I’m looking at two huge now empty rotivated smooth flower beds waiting for grass turf. By this evening I’ll have an oasis of green calm. So glad I saved up the money for this. And I’ve just got rid of a huge burden of guilt that it got so bad, frustration because I couldn’t actually do any gardening on these beds, horror because they looked so ugly consequently. Serious amount of nettles and brambles and this horrid grass thing that reseeded everywhere and was impossible to kill. Believe me it was a burden. A big one. Now it’s evaporated, in puff. That’s better. In fact it’s more than better frankly. Now a big example of how incapacitated this disease has made me is gone. Mowing grass is easier not just for me but for anyone else too.
So the trick I’ve found, the hard way of course as none of us ever learn lessons the easy way, is to persist with some focus on looking forward with different goals.
Cyber hugs on the knees though, that’s a slap in the face you didn’t need.
Just hugs on all you’re juggling with presently. Someone once told me the only way to eat a metaphorical elephant was one bite at a time. So keep chomping on slowly and steadily.
Hmmm, I’m not even 50. My brother in law is in his 80 and runs around like he’s 21 helping all the old ladies in the neighbourhood. What the…?
Loss is a reality, that’s a fact. Acceptance of it…? OHH NO, NO, NO… Acceptance that takes lots longer.
And when you learn to FULLY accept it all… …can you tell me how, because I still battle it.
Some days, yea, it’s ok I know my limits. But some days I fight against it all. Silly really because I know there’s consequences for pushing those boundaries…But I don’t want to accept “THIS”, so I do a bit more and a bit more, then get annoyed that I’m in agony because I’ve done too much. GGGGrrrrrrrrr
I think part of the problem is today I could be OK, but if do exactly the same things tomorrow it maybe too much, my limits vary massively.
The other issue is that if I didn’t do something I’d drive the wife nuts (OK, more so than I already do) so I’ll get the wood delivered. Then it’ll be up to me to stack it all, at least I’m doing something (Well, that’s what I ‘try’ to convince myself of…)
The battle with self is 1/2 the battle.
Merl from the Modsupport Team
“I think part of the problem is today I could be OK, but if do exactly the same things tomorrow it maybe too much, my limits vary massively.”
Yes! That is a big problem for me. It makes it very difficult to make plans to do anything which is frustrating to those we are around. I might think it would be great to have a bunch of friends over for coffee or a bbq but when the time comes, I just don’t want to make the effort to hide the pain and sadly can’t wait for them to leave! Hummm maybe pain makes introverts of us? But, “Misery loves company” right? Maybe THAT’s why we are all here!
Thanks and I admire your outlook and approach though you have been through so much. Those shoe boxes will bring much joy and a message that is life giving! We also packed with our grandchildren.
One thing about rare conditions is the isolation. Just in having someone say “yea, me too…”
“Ohh phew… …so I’m not the only one…” because a lot of the time there’s very few who have any clue of the realities, very few. That understanding can be worth it’s weight in gold.
Merl from the Modsupport Team