What about getting some exercise ?: I am on W&W... - CLL Support

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What about getting some exercise ?

FairweatherSailor profile image

I am on W&W having been diagnosed with CLL two years ago. I was checked in January and no treatment is planned any time in the near future. We are quarantining for 12 weeks (like most others) and I am wondering what exercise people are taking. Are you strictly keeping within your home and garden or are you taking the occasional walk or run further afield ? My wife and I are both retired but exercise like walking, running and cycling would previously have been part of our normal weekly routine. We are fortunate in having a nice garden but I have difficulty envisaging 12 weeks and probably much longer without proper extended exercise.

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FairweatherSailor profile image
FairweatherSailor
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33 Replies

my wife is semi invalid and can't walk far. we got a treadmill for both of us but i'm the only one who uses it. strictly as a level walker -2 miles an hour 1 percent incline

WinJ3 profile image
WinJ3

I use an elliptical machine. I try one half hour about four times a week along with simple daily stretching exercises. I get tired quickly so I need to push myself.

Win

I am watch and wait too, and received a sheilding letter last week which made me anxious and even feel a little guilty about going out for my usual daily walk. However we are lucky enough to live in a quiet area and going out at certain times such as early morning or late evening ensures that we don't see many people and it is easy to avoid them and keep plenty of distance. The advice by necessity has to be very broad and includes extremely vulnerable people living in more crowded environments as well as more rural ones.

I find it more risky working in my front garden with neighbours stopping to chat than going for a walk at a quiet time!

debs24 profile image
debs24

Hi.

I received my "shielding" letter only yesterday but have been isolating for 5 weeks already!

I took an informed decision to continue with a daily walk - I figure the exercise and vitamin D would be better for me than staying inside 24/7.

As the previous poster does, I choose my walk time and route carefully. I live in easy reach of open countryside, deserted golf courses and quiet woodland, and rarely meet anyone else whilst I'm out.

Once I'm back home, I'm as careful as I should be - no visitors/visiting, no shopping and plenty of hand washing!

I realise I'm not strictly adhering to the guidance but, again as the previous poster agrees, the guidance is, understandably a "blanket" document, which covers many conditions and, inevitably, many levels of health and vulnerability within those conditions.

I feel great for having my daily walks - I hope you feel comfortable to make a decision that suits you🙂.

Stay safe, everyone!

You can walk outside as long as you stay 20 ft away from other people, and wear a mask just in case.

Justasheet1 profile image
Justasheet1 in reply to

Pacific,

20’ outdoors even with a mask? I think your numbers are off a little. It’s 6’ indoors I thought.

Jeff

in reply to Justasheet1

There have been several studies done over the past two months that show droplets from coughing or "saliva talkers" can go 20 feet away. There is an article in the NY Times yesterday or Friday. I know! I was like holy cow, how can I be safe with CLL? I am going to try to stop going out at all except to medical appointments. I always wear gloves and a mask, and put a disposable glove over my other glove before touching anything in the store.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to

Here's a recent post about non peer reviewed research on this topic healthunlocked.com/cllsuppo....

We don't yet know how many SARS CoV2 virus particles are required to contract a COVID-19 infection.

Neil

Ghounds profile image
Ghounds

Hi, I live alone, semi rural UK. I have been walking with the Hound at times when I'm pretty sure nobody else is likely to be out. Not every day.

DRM18 profile image
DRM18

This article should make you feel better:

apple.news/Ao--rXJeESvOhUZI...

PaulaS profile image
PaulaSVolunteer in reply to DRM18

Thanks. The article certainly eased some of my worries...

Paula

PlanetaryKim profile image
PlanetaryKim in reply to DRM18

Useful article. Thanks Dave!

DriedSeaweed profile image
DriedSeaweed

If you can figure out when most people are not out. Go then.

Jcilom profile image
Jcilom

I walk the stairs a fair bit, it's a good cardio exercise and also good for your lungs. I also use fairly light dumbbells for muscle toning, cans of soup would do just as well. I stretch lots and I dance around the house every day. I find singing lightens my mood, my husband's too. He thinks I'm a hoot. A note to end. Please NEVER hold your breath while you exercise.

Carajito profile image
Carajito

I walk the stairs every day between 50 and 300 floors (my fitbit keeps track). I use one hiking pole to give extra balance because I certainly don't want accidents right now.

I walk my dog for short walks now where he cannot meet other dogs. The poor thing doesn't like it, but he's getting used to my "paranoia" outside. I stay away from other people at least 20ft. I keep scanning front and back for upcoming people and bicycles and cross the street whenever I can to avoid other people or even turn around if that's the safest choice.

Other than that I have a treadmill at home that I use and some weights.

I feel like I exercise more now than ever. Not just to boost my immune system but probably even more to boost my mental health while staying home alone. It sure distracts from all the corona anxiety.

Smac29 profile image
Smac29

I am 6 years in watch and wait. I’ve been walking outside daily. If someone is on the sidewalk, I’ll walk in the street. And if people are in the street and sidewalk I’ll turn the corner and wait until they pass. I stay at least 6 feet away. I started wearing a mask outside during my walks. I also cycle and do weights inside the house. I do think being out in the sun helps!

pati23 profile image
pati23

Hi FairweatherSailor

I have found it difficult at the begining of lockdown and went for 3 walks early morning, having bumped into a runner suddenly appearing behind a large van, breathing heavily, i was protected,

i decided it wasn`t worth it.

I have had a DVD from Macmillan called "Move More", a professional and 2 others demonstrate. 3 levels, and its good as no lying on the floor, for me.

i tried to go to the gym and did not like it. this looks a bit twee but its an hour long in 4 sections;

Warm up, Cardio, Strengthening with weights( cans beans, bottles water, if you have none), and a Cool down.

As i have done it over the weeks i actually have the begining of biceps!! and i have resolved an injury to my ankle, and feel my hip muscles are more solid. even the warm up alone is a good exercise.

You can check the Macmillan shop, or see if its on line

See PaulaS recent post, researched

still would prefer to be out, in the counryside

Pat

dmmck profile image
dmmck

I walk every day. I wear a mask and walk when the neighborhood is quiet. I also have an exercise bike I can ride if I don’t make it out for a walk.

GPip profile image
GPip

Hi

Like you we’re used to walking , swimming, cycling, dancing and now can’t leave the premises. I’m finding it hard so I imagine maybe you are too.

I was climbing the stairs regularly to begin with which I decided was better than climbing the walls! Since then as we’re lucky enough to have a garden I decided I needed to use it. I’ve put on my current lockdown playlist , plug by headphones in and have been doing circuits around the garden. I’ve been pleasantly surprised how much I’ve got into it and have noticed so much changing each day in the garden and in myself as I do my tours around the garden. This plus gardening has helped considerably. I have invested in a weighted hula hoop and a mini trampoline too.

As to whether you should be going and about, there seems to good evidence for people at any stage of CLL being more susceptible to severe ill health should they contract cv19. This has been written about before on this site. It is very difficult to envisage this being exercise for the foreseeable future. Personally I’m trying not to think too far ahead as this would make it all far too difficult to contemplate.

Anyway just my thoughts. I appreciate how you might be feeling ....

Kathp profile image
Kathp

Hi I’m 3.5 years w&w, not received word one from anyone about self isolating, but have done so for nearly 6 weeks now.

We take our walk after the daily Downing Street bulletin when there’s not many about.

Have a golf course next to us & only see a couple of folk but way in the distance. It really does lift our spirits to have greenery as far as the eye can see.

Gardening, the usual trips up & down stairs plus Joe Wicks/Pilates every now & again seem to be doing the trick; hubby looking very trim these days (not so for me)! I have a wii fit step left over from when we used the console and it’s handy to use to catch up on my steps, & my Fitbit helps me keep a record.

It must be difficult for you as you are both so active; hope this helps.

Stay safe & well x

blowinginthewind profile image
blowinginthewind

Years ago, I bought a sort of cross trainer thing - it isnt like the ones in a gym, it is a domestic version. It has been in basement for years. I am in cardiac rehab because I had a silent heart attack in January. I have various exercises; and my husband has brough it up from the basement, and it is living in our hallway. Then when I want to use it, he sets it up, facing the front door, we open the door and I can breath in the fresh air from open door whilst I exercise. Nobody can see from from the road, which is good. If you ask around you might find someone with useful equipment in the basement or garage that you could borrow, to use in your home or garden.

bennevisplace profile image
bennevisplace

Before I tell my story, let me direct everyone to these online resources. For some reason Macmillan has recently removed some useful videos from its website.

youtube.com/watch?v=ZRP_hiw...

youtube.com/watch?v=_BXot5b...

youtube.com/watch?v=cpZWwxJ...

youtube.com/watch?v=LjDeex6...

Just 2 months post FCR treatment I'm "extremely vulnerable" so my wife and I are doing everything possible to shield ourselves. We are fortunate to have a large house over 3 floors, a large garden, country walks from our doorstep, and two dogs to take with. So absolutely no disincentives for exercising. My typical walk is 2 to 3 km, 30-40 minutes, and my speed varies according to how I'm feeling on the day (ups and downs on the gradual road to recovery).

I was diagnosed age 55, now 69. My study is on the top floor, 40 steps from the ground floor, and just the daily routine has maintained leg strength over the years (mountain slopes no problem 2 years ago, pre treatment). My aerobic fitness is still pretty poor though. An hour's gardening and I am done, and I have taken a few spins on the exercise bike and struggled. This is something for me to work on!

CoolGreen profile image
CoolGreen in reply to bennevisplace

Hi bennevisplace! I am 55 years old recently diagnosed with Cll. I found relief that you are now 69 yrs old and kicking. Do you ever get knee pains when you were diagnosed 15 yrs ago? I have knee pains and fatigue when i do long walks and exercise.

bennevisplace profile image
bennevisplace in reply to CoolGreen

Hi CoolGreen,

I've a history of lower back problems following a disastrous injury and a laminectomy aged 30. Regular conditioning has minimised the long term effects, but in the past 20 years or so my left hip and knee have periodically flared up in sync with lower back pain induced by heavy lifting etc. Had arthroscopy on knee 6 years ago, minor improvement. Has CLL exacerbated what is essentially progressive osteoarthritis? TBH I don't know.

It's easy to say "well I'm not getting any younger" and give into it, but in my experience it helps to push through the pain and keep exercising every single day. Not the kind of exercise that hammers the joints (I gave up squash in my early 40s) , but any aerobic exercise to maintain good circulation.

A good friend of mine also had an arthroscopy and has achilles problems too, but is still running (not jogging) 50 plus miles a week at the age of 70 with the occasional marathon thrown in.

G1llHa1n profile image
G1llHa1n in reply to bennevisplace

If you look on Youtube, there's some short straightforward exercises - good starting points - under the heading Move It or Lose It - various topics including Balance

bennevisplace profile image
bennevisplace in reply to G1llHa1n

Thanks, these look good.

I can't figure out why Macmillan have taken down the set of keep-fit videos that were on their website only a week ago - unless it's because they are now packaged as a lucrative DVD!

BobG40 profile image
BobG40

I've been walking every morning so far, get out early not many people about, look out for the joggers who run up from behind without warning and pass too close.

laldoroty profile image
laldoroty

I am just reaching 80 and my wife 75, besides taking the occasional walk outside (its still fairly cold in Canada) we practice yoga on the internet. Fortunatly our yoga studio we normally go to is doing it live everyday for its members but there are hundreds of videos on Utube to follow for all levels.

Big_Dee profile image
Big_Dee

Hello FairweatherSailor

I am firm believer in getting moderate exercise with CLL. I was having shortness of breath about 3 months before treatment due to falling hemoglobin. I started doing 3+ miles everyday and feel it increases my bodies call for more red blood cells. cllcanada also exercised with 40 minute walks twice a day which he felt allowed him to be off oxygen with lung cancer. Blessings.

Thanks to everyone for sharing your experiences. Exercise is quite a big deal for me. I had been planning on cycling the 400 miles on the national cycle route from London to Fishguard in Wales this year (over several days !) so just doing some exercise in our house and garden feels very depressing. We are lucky in living in a semi-rural area and there is a public sports field at the back of our house which is not currently being used. So for the past few days I have been going out there early and running a couple of kilometres around the field. I occasionally see a dog walker but it is very easy to keep distant. Not strictly to the rules I guess but I think that the exercise helps me a lot both mentally and physically.

alexmcg48 profile image
alexmcg48

I got taken off the shielding list last week, so now I'm doing what the over 70's are expected to do.

Before Covid I used to go for a fast walk for 40 mins or so early in the morning.

I had something like the virus for the first 3 weeks I was shielded & once I started to feel better I constructed a 30 min workout I could do indoors, so even though I was taken off shielding I'm still doing the workout.

Once I got taken off shielding though I started going out for a walk with my wife for 30 mins or so, so now I'm back doing 2 lots of exercise a day.

We're lucky because we live close to a very large park (30 secs away) & we can walk & keep something like 50m from others, so keeping SD isn't an issue for us.

I think if your someone who's used to exercising you have to find away of keeping it going both for your wellbeing & hopefully help keeping you on W&W for as long as possible.

FairweatherSailor profile image
FairweatherSailor in reply to alexmcg48

Many thanks for your reply. I am really interested that a) you are no longer on the shielding list and b)that you have CLL and seem to have got through something that resembled Covid 19. I assume that you are on W&W. Did you automatically get taken off the list ? I just got a letter right at the start of the lock down and assumed that everyone with CLL is on the list. Also really encouraging that you have recovered. Are you in the 70+ group or just treating yourself like a 70 + ?

alexmcg48 profile image
alexmcg48 in reply to FairweatherSailor

72 in June.

Been on W&W for 5 years & there was no reason given for taking me off other than "on review". I assume because my count is fairly low, all my other bloods are considered to be in the normal range & because I'm not on treatment they decided to take me off.

To be honest I've had a couple of viral infections this year. One in Jan & one that started on 18th March. The 2nd one started as a problem with my sinuses, developed into a heavy cold & then a dry cough coupled with a loss of appetite, energy, taste & smell. I don't consider I had fever, although my temperature was 37.8 at it's highest & since I've recovered it's been around 35 & I was taking paracetamol from the off. Equally I never really had a problem breathing, so I'm not sure I had it, but my wife is pretty adamant I did, although we may never know with testing.

It's taken awhile to recover from it & I only started to feel more like my normal self about a week into April.

Mind you I did tell the Shielding team all this when they called me, so they might have decided I'd had it & took me off the list.

In a way I was quite glad because it allowed me to join my wife on her daily walk & I hope it will allow me to join friends sooner rather than later, although current suggestions seem to suggest us over 70's will kept in lockdown for a year or until a vaccine is available.

If they offer testing to anyone over 70 to see whether we've had it I'll be putting my hand up, other than that I'll be following the advice for the over 70's.

Take care & stay safe.

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