PLEASE READ: What would like us to chat about on the community?

Chloe_Scope

Hi everyone!

Hope you are all doing well. Just a quick question for you!

What content do you like on the community*:

• Blog posts where someone shares their story
• Awareness day posts
• Current affairs 
• News stories 
• Articles written by us about a particular topic

*This is just to gauge interest at the moment, but all suggestions will be looked into.

It would be great to hear what you like and don't like. Do you have any further suggestions? What topics do you want us to cover? Feel free to add your thoughts below.

leeCal

All and any of your suggested topics look good to me @Chloe_Scope

amsofly

Hello @Chloe_Scope, thanks for coming up with those, in my opinion, I think they are all great topics, and we should go with all.

66Mustang

I’m interested in discussions about most things. I enjoy most of what is posted on the forum. I like the articles written by the Scope staff and I sometimes like the guest posts. I used to like the food posts but they seem to have stopped since thespiceman hasn’t been on the forum.

I don’t think what we don’t want to discuss is really relevant as we can simply not click on something if it doesn’t interest us - it is unfair to stop others discussing whatever they want to just because a few don’t like it. For example I’m not keen on discussing politics and the arguments that follow so I simply don’t click on or reply to the political posts.

RAwarrior

@Chloe_Scope
I think all of your suggestions are great.

 I think topics such as “myth busters” about certain diseases might be interesting to raise awareness about the many misunderstood conditions. I would suggest Rheumatoid Arthritis as one suggestion however, I would like to know more about other diseases so that I have a better understanding.

colet

Feeding tube advice 

janer1967

I agree missing the spiceman cooking suggestions so maybe a share your favourite recipe post, as Im not as healthy as spicemen or like all the pulses and herbs etc

Also like the more light  hearted posts like name animal or person below me type

Current affairs and recent news are also good topics

davegregson40

I think maybe share challenges in life and also positive experiences and things we are looking forward to doing in the near future 

Chloe_Scope

Thank you everyone for sharing your thoughts!

davegregson40

thank you everyone in the community and that's when we are stronger as a community 

Bryce10

Is it ok to talk about perimenopause periods because on my first day of my periods I have a pain.

christian96

Is it okay to discuss endometriosis or not?

davegregson40

I think we should be able to discuss those personal challenges and difficulties facing us and sharing these to help each other. A song as we dont breach anyone elses confidentiality. Tbe same with discussing our positives and food experiences and things we are looking forward to.
x

chiarieds

I read all the blog, Scope & 'awareness' day posts, but, as we perhaps should be aware of different disorders, & not just on a particular day, I would welcome posts about different disorders, such as rheumatoid arthritis as mentioned above, as this may promote better understanding, & therefore support within the community.

Any new research or understanding of the main disorders our members face.....ASD, cerebral palsy, osteoarthrosis, etc., & the things we often share such as chronic pain, or coping with an 'invisible disorder.'

Anything else really which is positive, & helps the community. I agree with @66Mustang that we can just choose what to read, & that politics discussions are not those I personally get involved in.

RAwarrior

@chiarieds
I think the ideas you have mentioned are excellent especially the one about “invisible” diseases.? 

I thought the awareness campaign run by another charity called “Behind the Smile” which many of you may have seen on the television about Rheumatoid Arthritis really highlighted one of the main aspects of this disease. Often I will say I am fine when I am not just so I don’t get someone frowning at me because they think I am complaining again. 

Rheumatoid Arthritis is a very misunderstood disease particularly when someone suffers from fatigue. I can’t really comment about other diseases however, I am sure other members of the online community may have experienced something similar by saying they are fine just to avoid the sigh or the frown which follows.

I would also welcome discussions about other diseases that I don’t know about.

harry01

@RAwarrior. Why do they frown? I was making a pretence of being fine. I found it stressful. This lockdown period allowed me to reflect on that stress. Man it's tough so I basically just have to have certain people to talk to. God man why did I jump on my arm. Stupidest thing I did in my life because they I needed people to actually understand my physical impairment. And then for that to lead to gingivitis and then for gingivitis to lead to aghhh penile pain or pelvic pain that refers it here. I mean. There's nothing worse ana man can feel. 

Sorry, I rant. It's my coping mechanism. I shouldn't even have this. All they had to do was help me brush my teeth.

harry01

Just make my quality of living a lot better. 

davegregson40

Yes Rheumatoid Arthritis is a misunderstood condition. My Brother has it and has medication to help. Peoole often still associate arthritis will bones and old age when it can affect anyone and it's very different to osteoarthritis 

chiarieds

Hi @davegregson40 - I would just like to add that both forms of 'arthritis' can be poorly understood. I have what I prefer to correctly call osteoarthrosis. -itis at the end of a disorder denotes inflammation, which is correct with rheumatoid arthritis. Osteoarthrosis as you correctly say, is usually associated with 'wear & tear' of the joints in older individuals. However some people get osteoarthrosis when they're much younger, as in my case. I'm hypermobile, what has been described as 'double-jointed.' It took some time, but I found out I had the hypermobile type of Ehlers-Danlos Syndrome. The hypermobility caused early excessive 'wear & tear' on my joints, as they moved so much more than normal.

RAwarrior

@davegregson40
@chiarieds

Many thanks for your comments?

Many people often confuse Rheumatoid with Osteoarthritis. I have both and I got OA at a very young age which is unusual for this type of arthritis. 

I have found many people don’t understand that Rheumatoid Arthritis is an autoimmune condition which can damage many parts of the body if left uncontrolled. It is also unfortunately a disease which even some GPs don’t pick up at an early stage and early treatment is very important. The Rheumatologist I am under has visited all the gp surgeries in the area to raise awareness with the about referring patients to a Rheumatologist if RA is suspected. I had to insist on being referred because the gp kept telling me to come back in a few months time even though my blood tests showed extremely high inflammation. I have also heard similar stories from other patients.

Thankfully the treatment for RA has progressed significantly in recent years?

Grinchy

The suggestions so far have all been good, i like reading about other conditions people have so i can better understand them, there are lots of different conditions on here, personally i have complex PTSD, i am hoping to learn how others deal with it to