How to manage energy

[DogsMakeLifeGood]

I'm struggling to manage my energy, I gave up work three years ago as I was too unwell to continue. The rheumatologist suggested swimming, I did 20 mins on Tuesday and I'm now in an awful flare. I'm going to try 5 or 10 mins next time. I just cant seem to manage my energy if I do something like change the sheets I'm exhausted the next day and in pain with a rash across my face. I cant seem to manage my energy, any tips would be so appreciated

[PMRpro]

This has a set of links that may help. It is also on the Lupus forum somewhere but this is the link I have to hand

healthunlocked.com/pmrgcauk......

Whatever you do, you must start VERY small, just walk in the pool at first - and only for a few minutes at a time. If I swam for 20 mins I'd be in a heap before getting dressed even! When I started hydrotherapy, even the getting dried and dressed almost finished me of. fSwimming is pretty energy sapping, especially when you haven't done it for a while. At the end of last session I was doing a full 45 mins aquafit and climbing the stairs and still felt OK. It will come but it takes time and that was after a year for me.

[DogsMakeLifeGood in reply to PMRpro]

Thank you so much that is so helpful. How do you manage if you have a period that completely wipes me out and makes me so low and emotional as my energy gets so incredibly low. I will start with 5 mins then in pool. Do you manage to do things like changing bed sheets that has put me in a flare!

[PMRpro in reply to DogsMakeLifeGood]

I do if I have to but I have a cleaner for one hour a week who vacuums as that kills me and does one other job - bed linen on my double bed comes round once a month as I'm a widow. Many years ago, when my husband had cancer and was perpetually cold in the hottest summer in Scotland for decades, we got a new double bed with 2 single mattresses and single duvets. I use one double fitted sheet to hold the mattresses together so things don't fall down the middle now but the mattresses are foam and very lightweight and then I used single sheets so I could manage to change bedding relatively easily. On a bad day, I did one half and then the other. Now I manage to swop sides with the bottom sheet myself. Pillowcases are OK but I cannot manage a double duvet - disgusting British habit if you ask me, 2 singles are so much better, my duvet is mine and that is where it stays, on my half of the bed!

[StriatedCaracara]

I go swimming and try to then pace myself during the rest of the week. Go to relax rather than swim distance. The main issue for me is the lighting. Sunlight comes through roof window across two lanes, and strong lighting around pool.

I think this is contributing to flares and rashes a bit.

I may ask for CK blood test to confirm that all is going OK.

[MrsMarigold]

Hi DogsMakeLife Good/ I’m smiling because I have 3 cavachons and they make my life so much better through illnesses of no end. I swim too and had to work up to my 40 minute routine every afternoon. But this is the key: I chose to swim and left other things behind. I chose it because my health is a fragile sandcastle and it all blows away if I move away from a Structure I have designed for my self everyday. Not a lot of spontaneous interactions or interruptions are allowed. Wow. Yes. It can get boring. For me living a structured life preserves my energy for family and friend activities for which I plan ahead. I have lupus and other AI diseases. Fatigue never goes away but is managed. I have a helper once a week. She changes sheets and makes bed. I got rid of all cozy large duvets. I have lightweight cotton quilts. I choose lightweight clothing as weird as that may sound. I can fold my laundry because everything is cotton or bamboo or linen. I can’t walk my dogs anymore so we bought a golf cart to go round the neighborhood with them. An indulgence but one that makes us all happy. And in the end, when I’m so tired I nap. I allow myself rest because pushing past it does not work for me. Best,MrsMarigold

[Vixen2]

Swimming is very gentle on the joints. That’s why your rheumatologist reccommended it. I think it’s fascinating, that even people that can’t walk, can still swim. Do you ever use a float? That can help take some of the weight. But it’s true. You should start slowly. Don’t push yourself too much. You don’t want to overdo it. Or you’ll give up trying. Listen to your body. If you have to have catnaps during the day. Just do it. Don’t be too hard on yourself. Give yourself the odd treat. If i’m in pain, or exhausted. I just get into bed with a bowl of ice cream. (Vanilla’s so refreshing) & i put a comedy on my tablet. Cheers me up in seconds. Good luck. X

[DogsMakeLifeGood in reply to Vixen2]

Thank you I need to be okay with resting, I often think life is passing me by if I'm just resting and I must be useful but then I end up in flares! I find it hard being at home so often but I really need to change my outlook and enjoy relaxing and looking after myself as I'm sure all the guilty feelings etc exhaust me! I hate how we are taught always to be productive and independent, when you get ill all that goes out the window!

[dg70]

Slowly slowly is good advice. It's a possibility that the light or lighting at the pool is sapping your strength quicker, I'd not thought about that. I used to love swimming but it doesn't agree with my skin now. I'd have a few slow lengths then just float on my back. I miss it. You just have to think can I manage packing my swim stuff, getting to the pool, changing, swimming, getting dressed and travelling back. There's a lot of activity involved in all that. Good suggestion to swim just for a few minutes. It may not be just the physical that's exhausting but all the mental activity involved in going for a swim that's extra exhausting. I know I can be asleep in the day more often if I have a lot of stuff to do using my brain. I manage a couple of 15 min dog walks a day, sometimes longer but you'll get to know your limits and not try and push past those limits. Hopefully you'll manage a bit more gradually or maybe you have a limit that you can't push past. Mine haven't changed for 10 years so we're all different.

[ferhana]

Hi - the replies have given good advice about starting with short sessions. I had to give up swimming as I couldn’t take the cold water - raynaulds made it very uncomfortable. Do take naps and stay well nourished with healthy meals. Don’t give up on exercise

[DogsMakeLifeGood in reply to ferhana]

Thank you I feel better about doing just 5 or 10 mins once a week now and resting. I think I slip into comparisons and make myself feel guilty if I'm not doing things or being useful. I think starting small will really help and accepting the rest without pushing myself to change sheets etc. I've printed off the pacing information and will work through it. I need to not compare but embrace a calmer way of life. I often feel bad for not being able to work now or worry about the future when I should just focus on the present.

[Paprika60]

I very well understand your strength/fatigue challenge. I used to be so for a long time. I couldn't handle swimming either due to the cold water temperature. It isn't just the swimming that takes your energy. It is the entire procedure, going to the pool, change, get ready, swim and then shower, dry and get oneself together to return home. It is altogether too much...unless you have a pool at home (😆). I started everything very slowly and little by little and taking lots of deep breath and talking to myself for comfort and assurance. Daily walk (rain or shine) and also gentle squatting (started with five and I do thirty now) and stretching exercises (five minutes a day am and pm). And I eat handful of nuts in between and try to eat really well. Food is the fuel...and sleep. Little by little takes you a long way. So keep going and you will find yourself a little stronger two, three months down the road. And if you have a set back, don't worry. Start all over again. Just like morning wake up and evening sleep. All good wishes.

[AimeeA]

For me, lifestyle changes are the most important. .my motto is pace yourself and listen to your body.

If you have a tired day, rest and don't push yourself. If you're having a good day, do more, but don't overdo or push too hard. Baby steps!

I don't try to do everything at once now either. Shorter errands and breaking tasks down and taking rest breaks between tasks.

I still mow my lawn, but I only do it right before sunset when the sun is weak, and I only do 5-7 minutes at a stretch so it takes several days to do it and that's OK!

Also look for other causes of tiredness. I discovered I had a low thyroid and vitamin D and needed meds for that. Also, dehydration can exhaust you and make you dizzy, so make sure you get the recommended water every day.

bad sleep or sleep apnea is another cause of tiredness. Check for low iron or vitamin D. Practice good sleep habits.

I wasn't drinking enough water, and once I did, I was surprised at how much more energy I had and I no longer felt faint.

Take your vitamins, eat well, stay out of the sun, and engage in stress reduction activities. All of those help with lupus, and fewer flares and contribute to more energy and being well.

Btw, I sometimes find changing sheets exhausting too. I may take all day to do it, one step at a time and resting between steps, but that's OK! Don't stress over it, just pace yourself and just be kind to yourself and adapt!

I've been known to bathe one half of my dog and if I get too tired or dizzy bending over and wrestling with her, I just do the other half later! She's learned to behave better in the bath or she knows she'll get a double dunking!

Go at your own pace, and dance to your own drummer!

[DogsMakeLifeGood in reply to AimeeA]

Thank you so much I need to really listen to my body xx

[Treetop33]

I know while technically exercise is a good idea, it's surely a long-term goal rather than something to do when you are still struggling to get on top of symptoms. I think one of the things we have to do with lupus is to stop striving, and then feeling bad if we can't meet absurd goals. The striving is making us worse. Abandon all goals and listen to your body. If you are tired and in pain, do nothing but make the tea, or if possible get someone else to do it. If you fancy a gentle swim, go, but don't set any goals. Enjoy the stress free experience of floating on your back or just enjoy the water. Take a stroll down the road, but only if you feel up to it. Give yourself a break, and try and enjoy life xxx

[DogsMakeLifeGood in reply to Treetop33]

Thank you so much, it is so good to know I'm not alone in this xx

[michaellasmith Administrator]

Hi there DogsMakeLifeGood,

Sorry for the delayed response to your post, I can see you have had some great advice below.

Did you start swimming or any gradual exercise?

I have included a blog from our site below, it is written by a Physiotherapist named Louise and discusses managing energy and lifestyle, you may find this useful -

lupusuk.org.uk/the-three-ms/

Also, below is our publication about managing fatigue -

lupusuk.org.uk/wp-content/u...

Let us know how you are getting on.

Warm regards,

Michaella

[StriatedCaracara]

Just found this on exercise

autonomiceducation.com/topi...

[DogsMakeLifeGood in reply to StriatedCaracara]

Wow that is so interesting. Exercising whilst lying down makes sense and why swimming is so good. I've never heard that before. Thank you so much for sharing. How did you find the info? X

[StriatedCaracara in reply to DogsMakeLifeGood]

I have found a quiet place to swim. Most people that go have different medical conditions. The hardest thing is getting there. Some walk, some share lifts etc.

We do what we can and afterwards chat as we dry our feet in the sitting area, outside the changing room. Only about 15 people there at most.

Just continually trying to move and having action plans, so moving about as much as can, even days can't get out.

[StriatedCaracara]

Lupus Team clip by Shannon Box football player.

mylupusteam.com/resources/f...

Seems like there is a way.

[StriatedCaracara]

Not sure if this helps

I like watching these videos trying to motivate myself.

healthunlocked.com/lupusuk/...

[DogsMakeLifeGood in reply to StriatedCaracara]

Thank you so much! Gosh that's a lot of exercise!