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

Chloe_Scope · August 2020

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 · August 2020

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

amsofly · August 2020

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 · August 2020

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 · August 2020

@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 · August 2020

Feeding tube advice

janer1967 · August 2020

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 · August 2020

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 · August 2020

Thank you everyone for sharing your thoughts!

davegregson40 · August 2020

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

Bryce10 · August 2020

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

christian96 · August 2020

Is it okay to discuss endometriosis or not?

davegregson40 · August 2020

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 · August 2020

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 · August 2020

@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 · August 2020

@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 · August 2020

Just make my quality of living a lot better.

davegregson40 · August 2020

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 · August 2020

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 · August 2020

@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 · August 2020

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

Richard_Scope · August 2020

colet said:

Feeding tube advice

Hi @colet
We have some advice on Feeding Tubes, in case you hadn't seen it

RAwarrior · August 2020

@Grinchy

Apart from Rheumatoid and Osteoarthritis I also have PTSD. I have posted about the cause of this under the Workplace Bullying thread.

You said you are hoping to learn about how others cope with PTSD.

I had started Cognitive Behavioural Therapy which was actually helping me however, the therapy was interrupted by Covid 19.

I am not trying to give you advice but I really do understand what PTSD is like especially when I didn’t have PTSD before.

I have had RA and OA for several years as I mentioned in my previous post and I know how to manage those conditions. However, with PTSD it is a lot harder to deal with.

I try to distract myself by doing things I enjoy which include gardening, photography, spending time with and feeding wildlife and spending time outside. I have found doing these things has helped me a lot.

I have posted lots of photos on the Wildlife and Photography threads if you’re interested.

The CBT therapist said I needed to focus on things which I enjoy to distract my brain.

Mindfulness can also help and there are several members of the online community who know more about this than I do.

Other members of the online community suggested EMDR treatment which a counsellor mentioned to me but I didn’t manage to look into due to Covid 19.

I only recently joined the online community and this has also helped me as I have got involved in several different threads about things that interest me.

I hope this helps and you are not alone😁

Georgiacdon · September 2020

Hi @Chloe_Scope I think all of topics are good, but I particularly like that we hear the stories of other people in the forum and articles about a particular subject matter. Thank u to all for making me feel welcome and look forward to getting to know u more.

Ross_Scope · September 2020

Thanks for the feedback @Georgiacdon, glad to have you as part of the community

It's great to hear you're enjoying being here.

newborn · September 2020

It would be interesting to see something practical. I like factual information . Although it's understandable people complain, it makes sense to unite to change systems, not keep demanding money. For example, one of the things long needed is official attention to the fact disabled people need regular rehabilitation exercise.

There is a mistaken unconsidered assumption that the n.h.s. must have physiotherapists to 'deal with patients', but that after that, the entire population can, and should "go for a brisk daily walk ".

Rehabilitation centres, lavishly equipped and staffed, are (rightly, of course) available for injured soldiers. But where is the logic? Either the whole injured or disabled population need exactly the same, to transform their lives, or the soldiers don't actually need any such provision.

Human bodies are human bodies, so logically, if ex soldiers or any other people are in constant pain, have various limbs missing, and so on..... they have no needs, require no hydrotherapy, no intensive then maintenance daily supervised exercise guided by disability specialists,. Let them have a couple of sessions from an n.h.s. physio, then go for that " brisk daily walk " (!)

The irony is, that in terms of results per hour of attention, the most disabled, weakest people show the most dramatic results. An hour a day for a month,, then maintenance sessions, with a disability specialist and any necessary specialist equipment can change the life of someone with greatly limited movement, like the late Professor Steven Hawkins . If it brings up the controlled strength and movement in just one finger, it can make someone capable of a degree of independence and communication, using technology to speak and to move about in an electric wheelchair.

By contrast, months and years of concentrated coaching and attention to an elite athlete may make absolutely no difference to their race time

roberttaylor570 · September 2020

Here in Medway the Leader of the Opposition Labour and Cooperative Group on the Council presents a weekly video update on all that is going on in the area since covid. He lists many groups with their contact details such as Citizen's Advice, Mutual Aid Road Reps, Food Bank, Street Angels, One Big Family, White Ribbon Campaign, Adult Abuse services, Bereavement help and much more. Some of these groups are Medway specific whilst others are nation wide initiatives.

Would these links be helpful?

sufian94 · September 2020

Hi everyone I am new here. I like trains. I am hearing impaired

byeck · September 2020

Hello hope your ok. I'm new on hete and just leaning my way around

😃

Chloe_Scope · September 2020

Hi @sufian94, welcome to the community.

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

Replies