Sick of inviting out your Fibromyalgia friend?




Question: Do you have a friend/relative that has a medical condition such as Fibromyalgia and you are sick to death of inviting them out as they never go? 

Do you often call them and get the answering machine? Do you wonder why you bother?
Do you often become frustrated and wonder why you still bother??



Here is some food for thought...


Whenever I do anything now I have to consider the consequences:
  • Do I have the energy?
  • Can I agree to something so far in advance?
These are the questions we have to ask ourselves every day, with virtually every activity even conversations!

The duration and severity of symptoms associated with symptoms differ with each individual, so it is often difficult to know what someone needs, per day so no-one can write us a how-to book. Some days we can even wake up and simply by getting dressed there are no kapow left for the rest of the day so we have to rest to gain energy regardless of just waking up. Whatever we have planned is then cancelled. Many agree we can battle through pain thresholds, but can not battle through exhaustion. It is a wall you can not pass until you rest. For many simply the anxiety of panic can come over them like a wave and crush any enjoyment associated with even the simplest of plans.

Having a debilitating illness it affects you physically (obviously), but that’s not all, it impacts upon emotional well-being, too. People often find that they lose their friends and social life simply because they’re alienated all the time. Friends no longer invite them to places as they always cancel, they lose contact with the colleagues they once had through work and no longer participate in activities that they enjoy. They often have feelings of guilt and isolation. Not only are they faced with a debilitating illness they never asked for they now also lose contact with the outside world as a result. The emotional frustration and pain can lead to depression or exacerbate the already existing depression.

Most of the time due to mental overload and the cognitive difficulties conversations are such hard work. The simple act of chatting can use up so much energy trying to work out words in a sequence, I now avoid them with certain people. People who are around me all the time understand me and the conversations can flow but even then I often get lost mid-sentence and forget what we are talking about. With my gang (son's, parents, sister and her gang) I am not embarrassed or self-conscious.

I can not do conversation when I am tired. I can not do people who seem to have an agenda of "pull yourself together". They physically drain me and turn my head into a marshmallow.

This is not isolated to physical tasks, mental tasks drain the life out of you sometimes.


The cognitive symptoms are often more troubling to the patient than other symptoms.



According to a 2015 review in Rheumatology International, some patients report that the loss of mental clarity can be even more devastating than the pain and fatigue associated with most Rheumatological conditions.


The hardest part is you ache to be the old you and chat for hours, but you no longer can tolerate it so you crave it even more. Like when I have a run of migraines I cannot drink coffee, yet coffee is all I crave!

When the exterior looks healthy yet with there is turmoil it can have a profound toll on our daily life and likely impact our emotional health. Rather than simply dismissing us as a waste of time just be patient and try and understand.

Many people hide the way they are and can seem nonchalant to the needs of others, it is not that they mean to let other people down continuously they simply can not help the way they are. Often when they try and explain they are silenced or not believed as many people do not conform to the stereotypical version of what a person with an illness or social anxieties should look like, act like.

Maturity and mental clarity now allows me the freedom to out myself and tell people I suffer from certain medical conditions, soon as I mention I have panic attacks the usual response is to be told I don't! I am apparently too outgoing, too bubbly, too confident. People are experts at my mind.

Why not ask your loved one what is the best way to communicate now? 

They may prefer a simple text "How are you today?"

I used to chat on the phone for hours to my Mum, now I text her more. It is easier for me. We still talk on the phone daily, she knows I still love her but don't talk for long as I get lost in the conversation. She spends a full day with me on Mondays, we have dinner together, collect the boys from school and have tea.

Please don't stop inviting

Even if you know that your friend always cancels party invites, never remove them from the list. It is so cruel to stop asking people simply because an illness they have makes them too weak or fear-stricken to join it. Buy getting an invite you have made them smile, write a little note inside that you understand they are unwell and often too ill to attend but to keep hold of the invite as it may be a good day and even just to come for an hour would be great to see them.

Friendships often change over the years, some of my closest friends are people who I met at school. If our communication levels remained the same I would still be passing notes to each other, meeting in the canteen to eat my dinner every dinner time, the bike sheds every break and waiting till my Nan was out to use the phone or being allowed 1 minute.

Friendships with an illness have to change super fast so hold in there and embrace the change.
I hope if you have a friend or relative like me and you often become frustrated and wonder why you still bother, you now think a little differently.

Love and gentle hugs to you all




Comments

  1. I am the ill one, and I pretend to be better than I am most of the time, but the loss of the fun things still stings. I just don't want it to be a constant with me.

    But honestly, after 27 years you'd think at least my sisters would get it. I would love to fly to Houston and go on a three day intensive don't-even-stop-to-eat shopping trip with them (not), even if just to sit there and see them parade around in their treasures in front of mirrors, but the reality is I could do that for a half hour, and then would have to return to an uncomfortable bare hotel room and wait for them.

    Short calls are best - and they never get off the phone when they call rarely.

    I hope none of them ever get sick - but maybe they'd see I didn't choose CFS and brain fog and all the rest.

    I have used my little bit of energy to write fiction - and my main character has a chronic illness (but still gets the guy after a VERY long trilogy) (see my blog if curious).

    I'd rather be well - there were so many things I was going to do when retired - but I am doing everything I possibly can with what I have.

    You have a lovely attitude - what a gift for your sons.

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    Replies
    1. Alicia, hello and thank you so much for taking the time to write such a honest comment. I am exactly the same.
      27 years, you must have a very thick skin as it was not recognised then. Is your blog also about chronic illness? I would love to have a read. I can no longer read book so enjoy blogs so much now.
      You have a beautiful attitude also, I really appreciate you lovely words.
      Love Ness xxx

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