Lost all of my friends?What do I do next?
Posted , 3 users are following.
I've had CFS since the age of 9 and in a few weeks I will be a 17 year old girl. So to be honest, I can't really remember what it feels like to be "well" and i've never really had a good track record of making and keeping friends. Recently I left secondary school to go to college, which is a whole new struggle in itself. Putting aside how unwell college can make me feel, I also feel like i've been made the third wheel. At first it was just me and a guy who was in my art class at secondary, we weren't exactly best friends but we trust each other with secrets and can have a good laugh, that sort of thing. Long story short I noticed a girl was finding it hard to make friends with the rest of the college class so I started talking to her and got my friend involved in the conversation and then 2 became 3.
But my problem is, now I feel really insecure with the friendship between the 3 of us. I only have the energy to go to college and nothing else. I haven't been able to meet up with friends from secondary school (some who couldn't deal with my absence and made it clear that they couldn't be bothered, which I understand, that doesn't make them bad people), even the one friend that really tried to stay in contact, who I still talk to (we aren't as close as we used to be). Meanwhile, the two of them have lots in common and have lots to talk about because they have lives outside of their homes and college. One of them has even learnt to drive, goes to the gym and is able to do any assignment last minute and get an amazing grade. The other has experience dating and travelling, but i've rarely even left my city. So sometimes, I can get completely blanked and spoken over - but I know this isn't intentional, it just happens.
I guess what i'm wondering is, has anyone met and kept new friends whilst having this condition?
The whole situation has me depressed, I feel as though I don't have a life. If I dare try anything new, my body will punish me later and violently at that. (One day out resulted in not only me being tired for the whole duration of that day, but kept me almost bedridden for 4 weeks after). Things I used to do, such as art, I can't bring myself to do anymore. Plus, the whole college animation course seems like a chore to me now - I used to be excited about it and passionate about what I was doing, but now all my work is just bad.
Everything has just seemed to stop for me, which annoys me because I didn't get the chance to start i the first place.
From the moment I got CFS till the present, it's only gotten worse and I feel like this is a dead end for me. 
What can I do to get the ball rolling again?
Any advice or stories of your own experience will be very helpful to me. 
0 likes, 5 replies
Beverley_01 BeccaBear
Posted
Hi BeccaBear,
Sounds like you have had a rough ride but, hats off to you for getting to college! I know how I struggle with things. I completed a maths GCSE two years ago that was a couple of hours once a week in the evening and that was so hard on it's own and I felt so ill with it. I then did another short course in teaching and training that took all my energy but managed to finish. I think that balancing your work and social time is key here but by no means easy. It takes effort and organisation on our part which is difficult when we lack the energy. Organise a meet up when there is a half term. Make sure you rest as much as possible. Explain to your tutor about your condition and the need to maybe have an extension for any work you need to hand in. Get as much help as you can. Anyone can type things up for you and having someone do that means you're not using that energy. Also, decide an amount of time you can stay for and try to stick to it as that will mean less payback. I do struggle to stay in touch with my friends but, manage the odd meet up which I look forward to, I just have to try to plan it well, which I find hard because I didn't used to be organised before.
Hope that helps
Beverley
Beverley_01 BeccaBear
Posted
The other thing I would add is try not to compare yourself with people without the condition. If they had it, I doubt they too would be managing the gym etc.
Also, I have a friend who also has CFS/ME. Before they got it, they were telling me I just needed to get back to work/do voluntary work-somehow this would make me better! Since they got it, and understand it, they know that the condition isn't so easy to manage.
Have you had a referral to any specialist services? I attended the CFS/ME service for a while which can help. They also gave a leaflet for family and friends to understand the condition that could help?
Also, try to keep in touch with the friends you feel are lost even if you can't meet up. Don't know if you use social media but, that can make it easier by addressing many people at once.
Beverley
BeccaBear Beverley_01
Posted
Thanks for the reply Beverly
Yes, I was referred to doctors that knew things about CFS, as well as an occupational therapist, but I didn't get any information for family and friends and I don't see a doctor who specializes in CFS specifically and my occupational therapist always just seems to butt heads with me and politely tells me that I "need to do more". To be honest, i'm wondering whether it's worth searching or paying privately for a doctor that specializes in the area.
It's good to hear that you have someone in your life that can understand you.
Beverley_01 BeccaBear
Posted
Hi again,
Are you in the UK? If you are, There are several specialist clinics within the NHS- I was referred to one in Leeds, West Yorkshire. You'd have to check one near yourself. Sheffield has one, Cambridgeshire. Check out online if there's one near you.
How are you doing with college?
Beverley
Finroth BeccaBear
Posted
Hi BeccaBear
Firstly, its not a dead end, Things just move more slowly for us with CFS.
I understand the way CFS steals your passion for some subjects. In fact it can get quite boring sometimes when the fatigue is on me and the energy it takes to enjoy something just makes it too difficult.
What I have been doing is expanding my way of life looking for things I can do and think about that I can still enjoy. For me I have taken up vegetable gardening (my old job before i got sick was I.T, I had never planted anything in my life and wasn't even sure what the Sun looked like). I can't do much in a week but it feels good when I finally get a crop going and am providing for the house.
For friendship I advise taking advantage of being a 3rd wheel. It is very important to try and maintain some friendships. I am a talkative introvert, I love company but it drains me of energy. So I prefer to meet up with a few people at a time. That way I can talk when I like and as my energy drains I can just sit and listen. My friends all understand my illness, If i am visiting they usually have a quite spot for me to go and lie down if I become too fatigued. Be open and honest about your condition and never be embarrassed, It just is how it is.
Another thing I do is talk online with my friends, we use Discord, but you could use Skype of whatever. Again I engage with people in groups so others can carry the conversations. It also helps that this can be done at home and saves energy.
Being sick does not change who we are, It just slows us down. Sometimes when I am bad, my friends may not hear from me for months. But when I am ready, I reach out to them, I am still who I was, and I still can share my interests with them and they share theirs with me.
I hope this helps you.
Regards
Finroth