The Chronically Ill Fan Girl @chronicallyillfangirl - Tumblr Blog

superspydaisy

“EDS back up, hey I see you there PoTs, immune system don’t you even try that shit with me”

chronicallyillfangirl

Bringing this back because it will never not be relavent.

#ehlers danlos problems #PoTs #immune disorder #chronic illness #spoonie strong

superspydaisy

If you’ve ever had to be awake for an operation or procedure, if you’ve ever had a drain pulled out of an internal organ, if you’ve had a joint pushed back into the socket, if you’ve ever been rushed down for critical surgery, if you’ve had to have a tube fed into your body while you were conscious then you know this fear.

Our T-Rex is Chronic Illness/Disability and we face up to her every time she comes knocking, because brave isn’t something you choose to be it’s something you have to be.

We are spoonies and we’re f**king badass.

#chronic illness #spoonie strong #spoonie life

Recently I sat in on my mums appeal regarding her ESA, she has clinical depression and anxiety. For 26 years she’s worked as a nurse caring for the elderly, the stress of her job mixed with other issues lead to a break down. A break down exacerbated by dealing with our welfare state.

In this appeal she said something that I think could help others. The DWP rarely show up to these but to hers they did. The only question she asked was “you state you need prompting to preform self care tasks, but you managed to be well presented today” I know from talking to other people with mental and chronic illnesses that this comes up a lot in various scenarios.

This is what she replied “just because I managed to put clothes on and come here today doesn’t mean they’re clean, it doesn’t mean I brushed my teeth, combed my hair or put on make up. It doesn’t mean I took a shower or put on deodorant. That might sound disgusting to you but I have no motivation to do anything for myself because my illness tells me I’m not worth it. If you gave me a basket of ironing to do and mixed in were yours and my clothes, I would iron yours and ignore mine”

Depression steels your self worth, it tells you you don’t deserve your own love, care or attention. You spend any energy you have on those around you while keeping none for yourself. You neglect your appearance so that you look as haggered on the outside as you feel on the inside, when you do pull it together usually it’s to maintain that mask of “I’m fine” but you’re not fine you’re dying on the inside. In part the reason we mask so succesffuly isn’t just because we’re experts at it, others are complicit in our masking because it’s easier to pretend everything’s ok than to accept that someone you care about thinks they’re worth so little and that there is nothing you can do about it.

When it comes down to it as family angry friends we can’t stand feeling helpless, so it’s easier to accept the poorly disguised mask depression wears. But if we’re honest with ourselves we know something is wrong, we see the warning signs, watch as that person deteriorates.

One of the things we can do is break the stigma, we can face our own ignorance and educate ourselves, we can make a decision not to fall into the trap of believing stereotypes. We can look deeper and face our own fears in order to support the people we love.

My mum spent 26 years of her life caring for others and when she needed help it should have been giving willingly. She was failed by every system that was supposed to be there to protect her. Luckily an independent tribunal ruled in her favour and she now can have the financial aid she’s entitled too. We can now put all our focus onto supporting her through treatment instead of battling the system.

#mental health #mental illness #depression #anxiety

I sometimes wonder if the opioid crisis was dreamed up by far right politicians, in an effort to make life so unbearable to chronically ill people that they’d rather take their own lives than live. The fact that that would even occur to me is a damning statement of just how dire the situation is for disabled people in the UK and the US. We are second class citizens and in an ultra conservative society we have no value. The rhetoric against us is so toxic that 120,000 deaths aren’t worthy of being news. 120,000 people either starved to death or comitted suicide because of conservative ideology and nobody cares. Where were the pro life movement then? Where are they now? Oh that’s right they’re voting for the people who think this is a positive outcome.

Sudden onset burning pain down full length of spine, chest pain and no sign of sleep in sight. Looks like this infection is not going to go quietly, finished my first course of antibiotics today so it’s looking like we’ll have to crack out the big guns.

#chronic illness #immune problems #ehlers danlos syndrome #spoonie life #disability

Like WTF? First of all I know more about my condition than you do because I live with it. And second of all don’t be telling me not to google it when I can see you doing it right in front of me!!! I think most doctors are amazing but the hypocrisy behind telling chronic illness patients not to google is astounding, especially when they themselves don’t have adequate knowledge of said illness and need to look it up. We’re all human and we want to know what the hell is going on and sometimes the internet really does have the answer. As long as you keep information in perspective and use reliable sources it is ok to do your own research. Chronic illness is a team effort and it will be until medical staff are better trained in rare illness.

#chronic illness #rare illness #ehlers danlos syndrome #spoonie life #disability

chronicallyillfangirl

I am sooo excited to share with you the news that finally after months of fundraising I am finally getting my new chair!!! It folds flat so no more taxis refusing to stop for me, no more not getting on buses because the wheelchair bay is taken. I can fold this down like a pushchair and wheel it on. And yes that means me being unashamed of being able to get up and do it, it probably means me having to put up with dirty looks and ignorant questions etc but that just something I’ve got to work on, I’ve got to work on being ok with not caring what others think or assume.

The batteries also slot into the chassis so it’s light meaning my Mum can get it in her tiny car. Which means no more killing myself struggling on crutches when we go out. Like I don’t go out with my mum or sis much anymore just because up till now I’ve not been able to take my chair.

Also 4 wheel drive which means more stability and more off roading YAY. I can go on nature walks again and not scare the shit out of all the animals because the motors are silent. I’m so happy I could cry, I want to go out and explore the world again and be a part of it again.

So when my chair comes and I shift this beast of a chest infection, I am going out into the world and doing shit I want to do. This is what a wheelchair is it’s freedom, it’s not a fucking prison that able people and Doctors want you to think it is. A good wheelchair is liberation and every disabled person needs to have free access to the mobility aids they need.

We don’t charge regular people to use their legs, so why does it cost us thousands of dollars or pounds just to be able to leave the house? I just really think that as great as it is that people want to help us fundraise, that it shouldn’t be the case that companies can charge disabled and chronically ill people inflated prices for essential equipment. There needs to be better schemes than just motobility to help people get what they need.

chronicallyillfangirl

Hi Guys this is called a Ninja Power Chair there are lots of diff mobility companies that make it or ones like it. There are a few different models, one you can even fold down with a phone app. So you just need to research them all and decide which is the best fit for you Xx

I am sooo excited to share with you the news that finally after months of fundraising I am finally getting my new chair!!! It folds flat so no more taxis refusing to stop for me, no more not getting on buses because the wheelchair bay is taken. I can fold this down like a pushchair and wheel it on. And yes that means me being unashamed of being able to get up and do it, it probably means me having to put up with dirty looks and ignorant questions etc but that just something I’ve got to work on, I’ve got to work on being ok with not caring what others think or assume.

The batteries also slot into the chassis so it’s light meaning my Mum can get it in her tiny car. Which means no more killing myself struggling on crutches when we go out. Like I don’t go out with my mum or sis much anymore just because up till now I’ve not been able to take my chair.

Also 4 wheel drive which means more stability and more off roading YAY. I can go on nature walks again and not scare the shit out of all the animals because the motors are silent. I’m so happy I could cry, I want to go out and explore the world again and be a part of it again.

So when my chair comes and I shift this beast of a chest infection, I am going out into the world and doing shit I want to do. This is what a wheelchair is it’s freedom, it’s not a fucking prison that able people and Doctors want you to think it is. A good wheelchair is liberation and every disabled person needs to have free access to the mobility aids they need.

We don’t charge regular people to use their legs, so why does it cost us thousands of dollars or pounds just to be able to leave the house? I just really think that as great as it is that people want to help us fundraise, that it shouldn’t be the case that companies can charge disabled and chronically ill people inflated prices for essential equipment. There needs to be better schemes than just motobility to help people get what they need.

#ehlers danlos syndrome #chronic illness #wheelchair