imlivingwithcfsme

[imlivingwithcfsme]

UK Disabled Students and access to healthcare

I was wondering if anyone else has been struggling to access to healthcare (e.g/ prescriptions, doctors appointments, Covid vaccine, etc) as a result of being a student. 

Throughout my studies, whenever I moved between my term time and home address, I found it difficult to get hold of my medication, which has led to lots of  111 calls to get emergency prescription (and then a lecture when it wasn't my fault). I have also missed hospital appointments due to letters being sent to incorrect addresses, and delayed treatment due to referal issues because I am a student. 

Most recently, I have struggled to get hold of the vaccine in my home address (I have been advised and have been shielding, and received confirmation that I can now get my first dose) as they cannot transfer records, which means that I do not appear on their system a eligible. This means I now have to travel several hours for a vaccine where my uni is, which will negatively impact my CFS. 

Due to the number of disabled students there are, I’m pretty certain I am not the only one going through this, but I was just wondering if anyone else is/has gone through this. 

[imlivingwithcfsme]

I get really bad pressure and irritation on my legs, super nauseous and dizzy, and I’d like to get crutches to help, but I’m underage and dunno how to bring it up and how my family would react. Sending spoons your way🥄!

Hi,

I’m sorry this has taken so long, my life is so chaotic right now, although I know everyone is feeling the same! 

Firstly, if you have a good relationship with your family and they are understanding of your condition, I would tell them why you think you need crutches and how this will help with mobility/quality of life.

Secondly, if you are unable to talk to your parents about this, or even if you are, talking to your doctor may also help/advice regarding how to help you best and they can help with gaining access to crutches etc perhaps. If you have a doctor that is not very helpful/dismissed, you are allowed second opinions. Having a doctor agreeing you/telling your parents what will help may also help them understand how to best help you. 

Although it may be more beneficial to go to an appointment with your parents, if you feel that you are unable to, in the UK, you are allowed to visit the doctor by yourself when you are over 16. I think this is still possible if you are under 16 (I have attached a childline link regarding visiting doctor as a child and they don't mention a minimum age): https://www.childline.org.uk/info-advice/bullying-abuse-safety/getting-help/visiting-your-doctor/

It may also be worth investigating other options, as crutches may not benefit you when you are dizzy. 

I hope you get the support you need soon, and you are as well as you can be!

[imlivingwithcfsme]

[imlivingwithcfsme]

Somebody with ME on Twitter, describing how they were made worse by graded exercise therapy https://twitter.com/RobertHMcMullen/status/1306534615276978178

[imlivingwithcfsme]

No longer AFK

Hi, 

I know its been a while since I have posted, unfortunately life got extremely busy and I physically wasn’t able to cope with my Tumblr account and have energy to do my masters (I could barely cope with my masters, it had just been an awful year health wise), so I had to prioritise my masters. Sorry I wasn't able to keep up with the questions either. Some people had sent me messages, but I don't seem to be able to respond.

But I’m back now, I may not be posting as frequently as I used to, but I’m gonna try to keep up with the account.

[imlivingwithcfsme]

fuckboys

[imlivingwithcfsme]

So I’ve lost a lot of my eyesight recently, basically after every migraine i lose part of my eye sight permanently (slight central vision loss mainly in my right eye, but more my peripheral vision in both eyes- left eye has lost more). The opticians and GP don’t know why I’m losing it, so I’ve referred to a neurologist and ophthalmologist, my first appointment is next week and I’m really stressed, because I dont want to lose my eyesight anymore and it makes it harder for me to do uni work because it doesn’t help my dyslexia when the words are slightly blurry anyway.

I’ve also just got a letter saying that I’ve been referred to get an assessment for ASD. But i dont know what will happen because they said it’ll be in 4-6 months time, but as it’s not urgent, I think that’s pretty good. Although a couple of weeks ago I got really upset at work because I was loud (2 year olds screaming) and then got super bright because of it so I had to run out of the hall and hide in the toilets so that’s not as good. 

Also, my housemate accused me of using my CFS as an excuse today to not clean. She wanted to clean tomorrow when she got back, but tomorrow I have a coaching assessment and then have to write a reflection on it, so I said I can’t do Sunday, I will do my fair share today. But because I wasn’t going to do it tomorrow she got annoyed at me, and accused me of just making excuses to get out of it. I’m really angry because I’ve always been understanding when she says she cant do something, or could she do it later because shes going out or shes going home. It just upsets me that because I gave her a reason that she didn’t like and didnt suit her, she had a go at me. 

Oh and on top of that I have mice again, and my landlady won’t respond to our emails saying can you come round and stop them from getting in (we have to remove them). 

It’s just a bit much at the moment, and I’m just stressed all the time. On the upside, for my masters I got 57 for my psychology module (pass) and a 70 for stats (distinction). Although, I was upset about the psychology one, I’m really happy about stats because the lecturer said it was a please to read and it means that I can keep up similar grade as my undergrad (hopefully) :)

[imlivingwithcfsme]

[imlivingwithcfsme]

[imlivingwithcfsme]

How to make and use a Coping Board

A coping board is used to help you keep yourself “on schedule” throughout your day.  It can be used by people who have trouble doing “daily” tasks like showering, eating, or taking medication. It’s also beneficial to people who have trouble keeping track of what they’ve done that day due to mental health related memory problems. This is also beneficial to people who (like me) don’t have the energy to make daily to do lists because that task alone is pretty exhausting and depending on my mental state can be overwhelming. By having a set list of things already prepared, it makes my tasks less draining. 

This is what a Coping Board is, a piece of cork board with short lists of things you want to or should be doing. I made my lists out of index cards, and I continue to add them as I have the energy or remember things I want to do.  First, start with tasks you want to complete each morning 

This is what my “morning” list looks like.  As I complete each task, I move the pin from To Do to Done.  This helps me keep track of what I have already done this morning and what I still would like to accomplish. You don’t have to do them in any particular order, it just so happens I did my first four in order today. 

Next, make a list of things you’d like to do each night before you go to bed.

This is what my  “nighttime” list looks like. I also reset my morning list as I complete my nighttime list, so its ready for me the next day. 

You can also add other lists that pertain to you. For example, I have a very hard time keeping track of what day of the week it is, so I added a “day of the week” list.

Each morning when I wake up, I move the pin to the next day.  I also added a list of things I’d like to make sure I do at least once a week.

Personally this list is more of a “wish list” of things I don’t want to forget about, but definitely don’t always have the energy for.  I reset this list every Sunday.

Finally, you can also add things that you use as self care tactics or coping skills. For me, since I practice energy work, this list is mostly about changing the energy of my personal space in my room. 

I try to do these daily, but sometimes weekly is more realistic. 

The great thing about a Coping Board is that its so easy to add or remove things from your schedule.  If you have a medication change, you can make a sheet to help you remember what dosage to take each day as you transition.  This is my summer board, but during the semester I would probably add different lists for each of my classes or things I need to complete like a paper or an art assignment. The possibilities are endless, and it’s easy to customize to what you need most. 

I hope this has been helpful for all of you! Good luck, and stay safe everyone. 

[imlivingwithcfsme]

hey

hey friend

dont kill yourself tonight ok

you have a really pretty smile and i know its not always easy to manage one but itd be a bummer if we never had the chance to see it ever again

youre really important and you matter a lot so stay safe and try and have a nice sleep

[imlivingwithcfsme]

Me: I hope this new and debilitating symptom isn’t permanent, idk it’ll probs just go away after a bit

Narrator: It was permanent

[imlivingwithcfsme]

[imlivingwithcfsme]

So i’ve made an appointment with the doctor about my motor and vocal tics (i’ve given myself concussion twice now because of them, and theyre becoming more upsetting and frustrating), and to talk about the possibility that I might have Aspergers (although I think its just called ASD now.....). 

I kinda always wondered, I’ve always struggled with making friends and keeping friends and knowing how to ‘act’ around and towards them. I’ve had (as my friends put it) ‘special interests’, around marvel, doctor who, hary potter, merlin, conkers, squirrels, supernatural, hamilton- theyve varied in length, but they take up more of my life than I know they should. Eye contact has always been painful for me, I have the 3 second rule to look at the eye and look away or i look at their eyebrows. I’ve overanalysed every single thing, and new situations and people make me really anxious, ever since I was a little kid, but my parents just ay I was incredibly shy. I was outgoing, dont get me wrong, and I would talk to people, but I didnt like being in that situation. I also have always struggled with light and noise being overwhleming. Yesterday I had a slight meltdown cause I was tired, it was bright in the kitchen, I was upset about tics and it was loud- my boyfriend found me in the bathroom in the dark rocking with my hands over my ears. I also had a meltdown about losing my dinner fork and my watch for uni. I also did the channel 4 quiz, and i know its only a quiz, but it said about aspergers (i have a shocking memory cause of my dyslexia though, so I cant remember what it said exactly).

But I know a lot of this could be just anxiety and that I’m an incredibly weird person (not a bad thing). Just, dunno, kinda nervous about it cause I dont want to waste their time if I dont have ASD. My ex-housemates, my current housemate whose known me since fresher year said that they think its a good idea, and my boyfriend said that no matter at least i know whether I have it or not.

[imlivingwithcfsme]

When I first saw this headline on Facebook I braced myself to be disappointed. But it sounds like this park was designed really well, consulting the disability rights community, doctors, etc. and keeping in minds the various needs of people with differing disabilities.

[imlivingwithcfsme]

please prioritize your own health and happiness even when it is inconvenient for others

[imlivingwithcfsme]

Disabled people who can walk short distances should not have to fear parking in a disabled space and walking into a store. 

 Disabled people in wheelchairs should not have to fear moving their legs or briefly standing up. 

 Disabled people should not have to fear using a cane on their bad days.

Disabled people shouldn’t have to feel weary about having too much fun and being seen enjoying themselves.

 Disabled people shouldn’t have to live in fear of getting attacked, getting called a fake and even getting reported for benefit fraud just because they don’t fit the ableist profile of what you think a disabled person looks like and acts like.

Disabled people deserve to be able to safely leave the house and live our lives without fear and judgment.