After 3 years into this autoimmune thing my husband and I congratulated ourselves the other night because we have learned to cope. And on further reflection I realized I have been given a great gift in the midst of this. Simplicity. I now live a very simple satisfying life. I save my energy to do only what I really want to do, what is really important to me. Lest you think this sounds selfish I include small acts of kindness for others. For example, if we have a nice meal with leftovers that will freeze I pass them on to a widow that no longer cares to cook. I am planning cut flower beds to be able to make and take small bouquets to people this summer. All very manageable for me.
Am i able to be the administrator of a school program where I used to work? No. Brain fog. Can I care for my grandchildren 4 and 2 for 8 hours a day? No. Can I mulitask. No. I sit with my heat pad on my shoulders as I type this so I am not pain free, however that terrible malaise has left me for now. I don't have much fatigue either but if I don't have motivation to do something I rest now because I know my body must be tired. I try to balance exercise with the need to rest.
All this to say as you make your own personal journey thru PMR you may find some unexpected gifts along the way if you keep an open mind and heart.
Wishing you Well today,
Bunnymom
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bunnymom
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Very wise words!!I too have decided to simplify my life have just handed in my notice at work🌈I started a v stressful job and developed PMR only 5 weeks after so have decided to take some time out to enjoy whatever summer Britain chucks at us this year!!!
Perfectly expressed. That is the art of living with these diseases. At least our lives are not rushing by in an over- committed blur, because we just can’t. The kindness to others is key, therein happiness lies.
I removed a notice from a car saying: 'xxxxxx police are lying pigs' Now I have armed myself with small notices saying something about spreading kindness and happiness to replace any rude ones I see!
What a sweet idea! Somebody in Sheffield used to do very neat little handwritten pieces of graffiti on the sides of ugly buildings with messages like “ love each other”. I found them cheering and intriguing.
I really like what you just said. My husband has always said that I had a hard time sitting down and doing nothing. I was always the great multi tasker. I think the only one who enjoyed that person was me and then was I really happy always trying to be busy? I have been forced to sit alot now for months (almost always with a heating pad). I feel like I have so many more friends (my pmr friends that I talk to everyday), I sit through and enjoy at least one movie a day, and am hoping to start up crafts again from my chair. I know about how good it feels to give to others because, for 90% of the crafts that I have done I gave away.
We bought a cute little cottage a little over a year ago to retire in and I've spent most of my time decorating it to make it the home I always dreamed of. Maybe I'm supposed to take time to enjoy it now! I hope my husband and I get to celebrate like you and yours soon 💖
Agreed bunnymom! I too have simplified my life. I have also developed a greater sense of empathy and compassion towards others now that I’ve experienced all that PMR brings with it. I’m now grateful for the smallest things and don’t take things for granted.
Strikes a chord - the heated wheat neck scarf is always on at home! I pace myself and keep pretty busy so if I need to sort the trotters I have to put time into diary - just this simple task can drain me on a work day! X
What lovely wise words Bunnymom. Pmr is frustrating, depressing, and infuriating but it makes you slow down. I do things more carefully now and it affects my thinking. Makes me take my time. The world won't end and I notice more of it now.
I wouldn't say inhave got simplicity yet bu definitely working towards it. I also save my energy for what I want to do and it's for a.very selfish reason, spending time with my grandson who is nearly 7. I might not be as energetic as I was assuming I would be at 55 but as long as his memories of his nanny are good then using my limited energy on him is all I want. Everyone else has to stand in line to see if I have energy spare for them. Still working towards that totally simple life where i dont feel guilty.YB
Ybb. I have an 8 year old grandson who is the light of my life. I’ve managed to let go of my old life although it cost me many tears and rages. If I can see my boy and his 4 year old brother I feel wonderful. It’s a huge mental shift. Please keep trying xxc
I sincerely wish this marvellous post could be pinned. I think it would bring comfort and hope to those in despair as I have been. I was not wise like you. I fought and panicked although latterly I’ve reached the place you have. Well done and thank you so much for sharing. Xxx
Through this journey I have learnt to say no more which I find difficult.I find myself volunteering for things then thinking about doing it and backing away.My husband reminds me I can help out when I'm better.👍😁
One of my epiphanies was when I realised I don’t have to do xxxx today, it can wait until tomorrow.....or the next day......or the one after that. I’m not keen now when the outside world comes knocking and tries to get me back to a timetable. Maybe that’s why we tend to isolate ourselves?
I too move to dos from oneday to the next and occasionally even move something up. I enjoy my list but I don't want someone else's or them adding to mine.
Brilliant to hear the tale of someone who not only learnt the acceptance of doing what they need to do , not what they think they should do , but also , the realization that the simplicity you were originally forced to live by will actually be a blessing and better way of Life when PMR is far in the past.
A perfectly positive feeling , hugs , well done , Bee xx
So true,you slow down and listen to your body and stay away from stressful situations and people when you can.We always have to see the positives in every situation.
Simplicity - great word and I can relate to that. Since my PMR diagnosis last year I have been simplifying every area of my life and trying to eliminate stress points. Get rid of clutter, keep only what I need, don’t over commit, keep plenty of time just to ‘be’, think ahead more, enjoy some creative pursuits, walk as much as possible and breathe the air. I look back and I was on a bandwagon for too long. Now it’s time to embrace this unpleasant illness and use it for the better in my life. #overcomingpmr is my mantra and get my life back.
Strangely the clutter is being tackled by me as and when energy allows. Cupboards arranged so I can get to stuff I use easily, throw out stuff I never use or rarely. Charity shop already has a bag full and I feel sense of something well done during the day.
Lovely uplifting post. I am adapting much the same. Have discovered afternoon crafting, catnaps with cuddles from my cat, saying no to invitations I feel will exhaust me but meet up for coffee and catch up instead. So thankful I don't have to deal with working life and this ailment of ours. Hard on those who do.
Well Done Bunnymom 💕
What a wonderful attitude, learning to say No was something l found almost impossible that’s why l eventually gave up work as l realised l was never going to recover while working under pressure.
Thanks so much for your lovely post. I can really relate 🥰 from being an extremely active person to having to leave all my active stuff behind. I feel I’m on my second life and have found my new love because of PMR. Things have slowed way down and simplicity rings true indeed 🙏
Well done on accepting your simple lifestyle. I am just recently diagnosed so have taken steps to chuck out the chintz of complications and although I would have preferred to come to this conclusion without being in constant physical pain of some sort, I am almost ready to move forward. I wish you well
Thanks for your uplifting post. I agree, I have no choice but lead a simple life. I can’t do hard. I make mistakes and try to compensate by being early for appointments, making unending lists and decreasing amount of activities per day. Being retired allows me to be more patient with my 95 year old mom who is forgetful and repetitive. She calls me many times during the day asking the same questions and immediately forgetting the answers! She finally has a compassionate caretaker! I am blessed that I still have her in my life. PMR lessons are invaluable but scary and sometimes difficult to see.
That's lovely Bunnymom! Great acceptance of this illness we're all suffering from, showing a chilled out and (almost) stress free life, a lesson we can all learn from. X
Thank you! Great post. I found it so comforting to read. I have finally learned to say no to morning appointments - just cannot get anywhere early or fast.
Beautifully stated, Bunnymom! I went through the same type of journey when I was dealing with Lupus. At first, I was devastated by the diagnosis (as well as the symptoms). I then re-evaluated what mattered most to me, which was my health/well-being. You can't have your health be a priority and at the same time ignore what improves or worsens it. After 4 years of managing symptoms, changing my diet, getting regular acupuncture, and leaving a very stressful job, Lupus went into remission. Fast forward 5 years and the PMR diagnosis and symptoms knocked me back. I've had to relearn the lesson of simplifying, changing expectations, and then, ultimately embracing the "new normal". Thanks for your thoughtful reminder of the gifts that this, otherwise challenging, condition brings --- if you just take the time to notice them. Blessings to you!
Blessings to you too. It does take us some to get there doesn't it? Hope I never forget the lessons I've learned. I now recognize suffering when I see it on people's faces.
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