Living With Limitations in the Family

This is the misunderstood side of my life - how I live with limitations. The other day, I visited my mother who also has RA. We went for a walk. I don't usually go for walks because I get plenty of exercise at the gym and going for walks isn't a great exercise for me. My back hurts and I get tired.

Other family members insist my mother go for walks too. They give her directions like if she would walk further she can get in better shape. She also should do her exercises, which she does. And she rides her little stationary bike while watching the news for 30 minutes every night. She gets plenty of exercise and really can't do more. I go to the gym three times a week and that's plenty of exercise for me.

My mother has had RA since 1989 and I have had it since 2012 (I think, maybe 2013). In addition we both have bad backs. She has had numerous back surgeries. I have just had cancer a couple of times.

With our health, we are not interested in getting healthier by working out because we are more interested in maintaining their health than becoming body builders. We just don't want to do too much and exhaust ourselves and then need days to recover and feel better.

We went for a walk. My mother had her rollator (brand is Hugo - She calls it Hugo, I call it Victor). We started our walk. We went down hill (because the hill is steeper if we go uphill) and we decided we would go until we felt we had walked enough and then would turn around. We went past the neighbors across the street, and then past the next house. At the third neighbor's mailbox, we turned around and went back. This is a neighborhood of houses with about 200' of frontage. It would be stretching it to to say we walked 1000 feet or 2 tenths of a mile. We felt that was ample. We thought the rest of the family would not appreciate how that walk was enough for us. And we don't need any more.

This summer there will be a family 2 week vacation. I have volunteered to take my mother up on the first day because neither of us work and we can start our highly energetic vacation which will consist of one activity each day (could be limited to going to the swimming pool) and a nap at 3pm daily. We also will not motivate in the mornings until after 9 am.

My husband was happy to hear that my mother and I will restrict ourselves accordingly.  Now we just have to come up with things to do within our limitations. Our plan is to have fun and not exhaust ourselves.

Health Caused Limitatons

Over the years we all accumulate our health caused limitations. I have just a few. Due to thyroid cancer, I have no thyroid and am dependent on a daily pill for the rest of my life. And with any decongestant I have to ask the pharmacist if I can take them because they often say do not take if you have 'thyroid disease' so I need to clarify.

Breast cancer left with left arm lymphedema so no shots, blood pressure cuffs, IVs, or any pressure on my left arm. So when I had surgery last week, I had an IV on my right wrist and a blood pressure cuff above it.

I also have two bad knees, a bad back, bursitis in my hips, etc that try to slow me down.

But a royal pain in the ass is my knee brace. I am so limited right now in what I can do. I can't drive. My other knee has started hurting. I am stuck at home.  I am whiney and frustrated.

This too shall pass. I hope I get the green light to drive tomorrow and a different brace that actually fits.

But if its not one thing, its another. Our health conspires to limit us. We just need to ignore it and work around our limitations and keep going.

I just needed to whine. Sorry.

Wednesdays Are Killing Me! (Or Having Shrinking Activity Limits...)

Yesterday I had big ambitions. I did go to the gym and the grocery store for both our house and my parents. When I go grocery shopping, I shop for both houses and then deliver my parent's groceries to them and bring them to their kitchen where they put them away. (Some how their tangerines ended up at our house this week - I will return them tomorrow.)

Then I came home took a shower and took advantage of the nice weather to lounge around on the deck while I had lunch. I later attacked the brambles but it was a short battle as my back started to hurt so I switched to knitting in front of the TV.

When my husband came home he said he was going for a walk so I went with him for part of it - 10 minutes-ish. I started cooking dinner which evidently was a mistake because at that point my back hurt so much I was having problems standing. I gave up after dinner and went to bed.

Last Wednesday I had similar problems. I went to my therapist, the gym, the grocery store for both houses, my therapist and came home exhausted. I think that's all I did. I don't remember.

The only similarity with the two days are the grocery and the gym on the same day.

The problem is since we moved I now live 20+ minutes away from the gym which is a mile or so away and my parents live on the way back home from there so I combine the trips. Logical? Yes. Within my abilities? I assumed so but I may be wrong.

Next week I will change my Wednesday. I will only go to the gym and the grocery store. I will not do anything else except reading, knitting, watching TV or any other lazy activity. The only other item on my calendar is the cleaning lady is coming. I will make a point to plan of no other exertion for the day.

Yes this is my life these days. My health is impacting my abilities to do things. I really wanted to go walk on the beach this weekend - this means walking along the shoreline a bit. Sitting down to enjoy the view. I used to go and walk for a good hour or more but can't any more. Then we go get clams for lunch.

My husband pointed out (I hate it when he's right) that I can't go to the beach, make dinner for a friend who is coming to spend the night and hang out with her. It would be too much for me and I would be crabby and to tired to have fun. So that is postponed until next weekend so that I can enjoy myself.

In the meantime, when I look at my calendar and try to schedule things, one item a day is all. One of my doctors just tweaked one of my prescriptions and I hope that will help.

All those "Don'ts"

Normal people (I assume because I haven't been normal in a really long time - at least physically, mentally may be another story) go to the doctor or dentist and get all sorts of advice. Floss, brush, eat healthy, blah, blah, blah.

Me I go to the doctor or dentist or other medical professional and get a list of don'ts.

• Don't lift anything over 15 lbs. (For the rest of your life)
• Don't twist your back (Ditto)
• Don't use a treadmill (Ditto again)
• Don't drink alcohol (because of your meds)
• Don't stop exercising (because you may never be able to start again)
• Don't rake, shovel, vacuum, sweep, or anything like that.
• Don't forget your eye drops twice a day or more often
• Don't forget your dry mouth rinse
• Don't forget your special tooth paste
• Don't forget your new prescriptions

And I'm sure there are more but its too early in the day for my brain to work correctly. These are followed by the lovely tips such as 'eat healthy', 'get plenty of rest', 'take care of yourself', 'floss' (because what dentist hasn't told you to floss), and 'here are some more tests for you'....
I just get frustrated by the limitations in my life. Why can't I just be normal and do all the things I want to do. Museums would be nice but that involves long walks and standing around. Two things I don't do well. And before you suggest it, I'm not ready for a wheelchair anytime soon. I like walking on the beach but now am limited to packed sand at low tide. And I can't go as far as I would like.

They say a cancer diagnosis leads to PTSD and depression often accompanies an RA diagnosis. So how's my mood? I have drugs for that. And therapy. And a lot of frustration.

An Experiment

Today I am experimenting. I am going on a road trip to visit my brother and his family 350 miles away. This is an experiment because my recent health issues make me tired, cranky, and in pain often. I am not sure how I will physically feel when I get there. (And for all you would be burglars out there, my husband will be staying home and will be protected by the cat in my absence.

I am sure I will be tired when I get there but it is important I see if I can. Its sort of a test for me. If it is successful, I will go on vacation this summer with a friend and visit Misty of Chincoteague which is a much farther drive. Its probably 500 miles and we will have to avoid New York City. (Yes we know Misty is no longer alive but I am sure her great-great-great-great-great-great grandchildren will be there and we can see all the other ponies.)

I also have a car load of stuff which my husband packed to bring to my brother. My little car is full of:

• a vacuum cleaner & extra bags
• two table lamps
• a 9x12 area rug
• a kitchen table
• a folding book case
• a TV
• a suitcase
• me

I think that's it. The suitcase apparently has to ride in the front seat with me. My husband packed the car and I haven't seen. I hope I can use the rear view mirror. My brother will unpack while I supervise. Loading and unloading the car are not part of my experiment.

I will report back on how I do with my experiment. In the last six months I have cut back on a lot of things that I do so this is a real test on how real my limitations are.