Helping someone with multiple sclerosis…it’s the thought that counts. Well, actually no, it’s not.

The crazy thing about living with multiple sclerosis is that stress can make your disease progression worse, but trying to avoid stress can be stressful thus putting you into a perpetual cycle of stress. Ugh…how stressful.

For me, the disease itself is not what stresses me out. It may take me thirty minutes to pull myself up from the floor after I fall down or I may be unable to open an easy to open package even with the aid of a pair of scissors, a blow torch and a hand grenade, but I can work through those things given enough time and persistence.

What stresses me out is unreliable and untrustworthy people.

A few years ago when I began having trouble with my legs, a friend came to me and said she would like to take me to my physical therapy appointments. I was so grateful and thanked her for the offer. Driving for me was starting to become dangerous. The next day as I waited for her to pick me up, she was a no show. My phone calls to her went straight to voice mail, and because my therapy appointment was extremely important, I went ahead and drove myself.

I chalked it up to maybe she forgot. She returned my call while I was in therapy and left a message telling me she overslept that morning and apologized profusely. I forgave her and all was well between us.

A couple of days later, I called her early enough before my appointment as a reminder that I needed help. Once again my call went to voicemail, she didn’t show up so I drove myself. After that, even though I knew she wanted to help, her unreliability was not helpful so I found other ways to get to my appointments.

Just because someone has good intentions to do something doesn’t help a person in need. Good intentions may make the doer feel good about themselves. They can go through their day patting themselves on the back saying look what I’m going to do, but it’s their actions that actually make a difference.

Over the years, I have had people say that they will come to my house to cut my hair so I don’t have to make a trip to the hairdresser, want to set up a cleaning schedule to help me with the cleaning of my bathrooms and kitchen, say they want to meet up for coffee and conversation, promise to stop by once a month to wash my van, and even say they will come over to cut my grass every other week…all without any followthrough.

But it’s the thought that counts, right? Well, actually no, it’s not.

Good intentioned people mean well, but without actions to back them up, those intentions mean nothing. Sometimes it’s better to step away from people who can’t be trusted in order to keep your sanity. And that’s okay to do. One thing I have learned over the years is that I don’t want to be a well intentioned, no action person. If I can’t follow through on what I say I want to do, then I just won’t say it.

I think the non-disabled world doesn’t understand just how much the small things they say they will do for us in order to help, matter. My philosophy: If you say you are going to do something, do it. Occasional changes are totally fine, just don’t make it an every time thing. Words matters.

MS Gets on My NervesMS WarriorMS Superhero

 





6 replies
  1. Glamalushdalc
    Glamalushdalc says:

    Promises can always be broken but it is vital that you let us know you cannot do it or make it as we are relying on u and trusting that u will fulfill it. I hate it. No phone call etc. I don’t ask for much!

    Reply
  2. Dee
    Dee says:

    Hi Penelope, I ended a long term friendship for this exact reason. I get injections (nerve block) in my back every 4-5 months from being hit by a drunk driver. My middle son always took me, however he and his family had to move for an employment opportunity. So my oldest son could take me but he had to put in for the time off a week prior to. Well Monday night, I called to see what time she was going to be there and she said “where?”I knew right when she said where I was in trouble. I can’t leave in a taxi alone;I have to be picked up. My son asked for an emergency time, when he could have just had a normal day off. Not the first time it’s been done but certainly the last.

    Reply
  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope there are some good people out there that mean well but can’t back it up. There are also bad people that do back up what they say and that can be bad for us.
    I have been given help from a company called Florence Nightingale Group to help with dressing , shower and night time dressing. This helps me and my wife as it can be hard for her. They have been good and mostly on time but like any group of people there has been some times missed and we have to get around it. but this has been great as they are good people and relative easy to talk to them and get some understanding what MS is about.

    Reply
  4. Peggy
    Peggy says:

    Love this. Soo agree with your….philosophy: If you say you are going to do something, do it. I was always that way! Get so frustrated now that i can’t and silly me thinking others will!!

    Reply
  5. bunny
    bunny says:

    welcome back 🥳🤩. you have been missed but so happy you had your own time and i hope you enjoy every minute of it.

    penelope & lara, yes i have encountered people like you have mentioned. to piggyback on statement you both made in your own way… yes the person who is
    depending on or looking forward to seeing someone ,,, is the person who gets hurt and stressed.

    the “offenders” don’t understand this, they don’t walk in our shoes.
    that for me is the biggest frustration.
    even when “confronting ” them, they just don’t get it and never will.

    we just would like some honesty and empathy NOT SYMPATHY–uggg LOL it goes a long way.

    also they don’t understand the ripple effect, the stress of either cutting them out of our lives or finding a way to deal with them.

    i applaud 👏🏻👏🏻👏🏻👏🏻 you
    both for sharing your feelings in a raw real way, your honesty and
    for finding ways of dealing with
    stressors.

    i’m open minded and spiritual. just want to say, may GOD bestow upon you both many blessings. sending guiding, positive and comforting karma your ways 🙂

    Reply
  6. Lara
    Lara says:

    Hi Penelope – good to see you back. I hope you had a restful break.
    I totally agree with what you say. I get frustrated at people who ‘blow hot and cold’. One minute they are busy promising this or that and then they don’t follow through.
    I hate to admit this: Many years ago my Mum and I were visiting my grandmother, who was in a nursing home at the time. A lady moved into the room next door. This lady happened to be a long lost schoolfriend of my Mums. Mum went next door to catch up with Sally, only for Sally to tell my Mum that she was resident in the Nursing Home due to the severity of her MS. Mum made a regular thing of visiting both Sally and my Nan. I was there with Mum, it was just before Christmas and Sally said she missed seeing the Christmas decorations at the local shopping centre. My Mum promised that she would take Sally in her wheelchair, to show her the Christmas lights. Sally was so excited. Mum visited Nan again the following day and whilst in Nan’s room Mum saw the Weekly Activity List for all the residents. One of the activities was a coach trip to the shopping centre to see all the decorations and lights. Upon seeing this ‘activity’ my Mum told me in the car going home, that there was no way she was going ‘to bother’ taking Sally, if she could get the same service from the Home.
    I am an MSer myself, having had this awful disease for officially almost thirty years and I will never forget how appalled I could get by someone’s thoughtlessness and unsympathetic and, dare I say, cruel treatment of another person who was regarded as ‘a dear friend’. This is my Mum I’m talking about. I love my Mum dearly, but I didn’t love anything about that scenario, for sure I am appalled by it.
    That was very soon after my diagnosis, so I wasn’t so aware of the impact that promises like this would have on someone so physically impaired. I am now very well aware. The only person that loses out in situations like this is the compromised person who builds themselves up and is full of positivity one minute, to then have the rug pulled from under their feet, and they are left feeling more disabled than they did before. I know firsthand now – my Mum has done it to me on many occasions. It’s either I allow myself to get so stressed out and upset about it, or I tell myself that I’m stronger than this. I refuse to let the MS get to me, so I won’t let her get to me, but sometimes it’s not easy.

    Reply

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