People no understanding

Hi, I was diagnosed 18 months ago, but they said it is likely that I’ve had it for about 5 years just before covid. I have a “friend” that I see maybe once a fortnight, we do go out and most of the time, things are ok, they have their own health issues, but I feel pressured into doing things when I’m seriously fatigued, I work 5 days a week, 2 of us in one department, the other guy had his job title down graded, his attitude to that is " thats not what I was employed for I’m not doing it", the firm is aware and do nothing, so just to stop myself getting stressed I do most of everything, by the end of the week I’m done burnt out, and then my "friend " wants to do something at the weekend if I say I’m to tired, I get well so am I, I get given suggestions that we could do, I feel I’m being pushed every way, everyone wants a piece of me, and it always seems when it suits them, admittedly I don’t like letting people down, and I do like to do things but, it always seems at other people’s terms, and sometimes it when I say how I feel, its like a competition, who’s suffering more, or I get told it can’t all be the parkinsons, sometimes I just feel like not waking up in the morning.

Hi Max, just read your post. Tbh, I’ve not been on the forum in a while,with one thing and another. I can relate to some of what you are saying. I’ve been diagnosed just over four years now, doing well and have to put some of this down to what I call ‘taking my slice of cake first’. A valuable lesson learnt, like you fatigue is a REAL condition some people do not understand the impact this can have on every day tasks. Like yourself I do not like to let people down either, so much so that I ran myself into the ground trying to keep up with what I could do at the speed I used to be able to. I had to stop and take a breath and realise I was doing myself no favours, it didn’t make me any less of a better person, I was doing my best and that is all you can do in your employment and in your social life. You mention your collegue had is job title down graded, are you picking up additional tasks, was this your choice or an expectation? I’m all for helping out, the more you give, the more people will take and becomes taken for granted. Do you have an understanding employer, do you have any reasonable adjustments to help you manage your condition?
As for your friend you see or is struggling to see your fatigue, a delicate one, but if they are a friend then I would hope they have your best interests at heart. Support is a two way feed, no one can judge your pain, your fatigue, your well being, they maybe able to pick up on when your having a bad day/bad period and offer that extra support or awareness. Have you heard of the Boom or Bust cycle?
Fatigue so you avoid activity and miss out on things that make you feel good. On a good day you do more to fit every thing in but end up overdoing things and become fatigued. An understanding friend will find some middle ground. I have had similar conversations, another idea to try with your friend may be to look at the spoon theory its a metaphor that helps people explain how chronic conditions and health issues limit your energy throughout the day. Hope you manage to find a compromise that suits you and your needs. Take care and shout out again, there are a lot of supportive people on here that may offer some more tips!

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Hi and welcome to the forum @Max62. We have a very friendly and supportive group here and I see that @AnaElsa has already chimed in with her own thoughts on what you had to say.

It’s good that you’re aware of your strengths and limitations and it would be great if everyone were empathetic. It can be difficult to understand what it’s like to be in someone else’s shoes and there are those who can’t or don’t want to take the time to explore this. That’s a tough position for you to be in and of course you want to present a strong front and join in where you can.

You might benefit from social or physical activities with others who have Parkinson’s too. There’s a local group finder at Living with Parkinson's | Parkinson's UK. You can also find events at Events | Parkinson's UK. Feel free to explore our website for other ideas. As well, our friendly advisers are available if you have concerns on 0808 800 0303.

We’re looking forward to getting to know you better.
Janice
Forum Moderation Team