optician and nf problems

so i saw the optician on friday and i have a freckle on the back of my eye near the nerve which is an nf problem i am being sent to a consultant and im hoping that its nothing to worry about my prescription has also increased so i need new glasses im hoping i dont wait too long and all goes well with the consultant and this is nothing to worry about

Zebra drawing

I am up late struggling with my lungs so drew a zebra to cheer me up

spinal clinic and drama performance

so yesterday was spinal clinic it went as expected they dont operate on adults unless the curvature is causing problems with organs she was angry as am i that when i went into foster care my medical care was not transfered correctly said  should of had the surgery in my teens but cause social services and child health messed up  didnt she has however made refferals to the people ive been tryng to see for a long time pain team and rhumetology so thats good
today we did a performace in drama the group i perform with is for young people wth experience of self harm , and we performed to proffessionals at a conference about access to services and the gaps in services for young adults age 18-25 it went well and me and one other girl stayed till the end some of the others did the performance and then had to leave the performance went well everyone complimented us and said how it was really effective to see it played out instead of just being told stories of where the services are going wrong the rest of the conference was really interesting and t felt amazing to get our voices heared and tell people who are partly responsible for making changes and have them listen so hopefully it wont go wrong for other people in the future although these things take time and ill likley be 25 when they are in place it gives me a good feeling to know that i may have helped to help them make sure other young people do not have poor care in the future
after this i went into town managed to buy k tape and ice packs pretty cheap also bough lots of lush bath products along wth a few things i needed i probably over did it toay i am very sore and feeling dissey on and off but i am happy  have had a really good day i got alot done and i feel content even if my body is giving me the middle finger

eds poem

joints pop toes click 

im still in bed i feel sick 

back crackles as i sit 

even though the skies not lit

hips ache head pounds 

its too early for all the sounds 

time to get up and face the day 

id rather be in bed to stay 

crack click crunch pop 

my body's musical ad it wont stop 

body aches body throbs 

i watch others head to their job

take a breath as my lungs wheeze 

allergies that make me sneeze 

i yawn as i get up 

im tired before im even up 

chronically ill they dont understand 

how much effort it takes to stand 

or how hard i try to walk

how much i concentrate just to talk 

i may seem boring i may seem lazy

some might even think im crazy 

but im trying i really am 

i am doing the very best i can

not everyone who is in a wheelchair is totally wheelchair bound

bad chest

been struggling to breathe well since last night , it started with just having a clogged up chest and now today i have a constant wheeze but im hoping i stay out of the hospital now that i have at home neb machine and the new tablet for asthma that i can just see the gp get some steroids and that my lungs will improve without needing to be admitted

escaped chinchila

so millie got out last night and then got really sleepy once i caught her cue another vet call who reassured me she was just tired and scared i was worried she had found a pill i had dropped or something seeing as i couldnt see it when i found her but shes fine just likes to keep me on my toes this meant sleeping late and the vet nuse ringing this morning to check on her the vet wants to do a general health check he was gonna do it this weekend but the nurse heared she was ok and that was that i will ring monday and get them to do a general check on them both then as it will likley be cheaper
health is so so chest is acting up and had to do a neb last night and stuggling today but will be ok joints and back are sore but ok
feeling guilty about millie escaping but i know deep down i could not of prevented it but instead i have put a little baby gate over the entrace to the alcove the cage is in so to get out now they have to get past the cage and the gate to get into the flat which will hopefully work

spoons

it made me happy to receive these in the mail today 

update and knee appt

so i didnt update yesterday as the night before that i had not slept at all due to pain keeping me awake
my knee appt went ok i got a new smaller brace that supports it over the joint to not slide accross but i can bend and walk in it fine ,he said any surgery in eds on my knee is unlikley to work but is sending me for an mri to see whats going on in there
been strugling alot mentally today s i was meant to see a cpn but she didnt show up and there was alot of confusion which stressed me out my meds have gone down but no one had record of me being on my previous dose they only have record of the current one and keep saying ive been on that all along which i havent but i no longer have the doset the old dose came in to show them so now im on a lower dose of my meds and that is also stressing me out
other than today being hard mentally though i had been doing alot better from the mental side of things it had just mostly been the physical and to be honest i think it is the physica causing e to find things worse than they really are due to injuring my back and being in pain with that and not sleeping because of that each is having a knock on effect
i have physio tomorrow which im not really looking forward to bt it has to be done
and i see my spina consultant on tues to discuss my scoliosis and if theres anything needs to change due to that
i have a whole lot of appts coming up so im really busy with that but i am doing ok and will manage ti al somehow looking forward to the weekend though where i dont need to do anything or be anywhere

wheel chair woes and the hypermobility unit ... money :(

looking into gettting a battery pack for my manual wheelchair but unfortunatly cant get them on the nhs i already have a wheelchair but i have to self propell and thats all the nhs can provide and they cant give a pack to make it switch between electric and manual problem is that because i cna walk short distances i cant get an electric on the nhs and even if i could i could not then fold it enough to get it in and out of my carers car to get on and off the stage when performing etc so i have to find the money myself but it can cost up to 900 pound money which i dont have
rang the hypermobility unit in london today , since gp has said he is not alowed to reffer outside of wales they said private consltation for an hour is 300 pound ore money i do not have but they did say they could see me within the month if i found the money privately considering saving and asking anyone who woud normally get me something for christmas (thats not many people but) just to give me a little money towards it by this i man not much at all but anything si better than nothing then hopefully with me saving and that i should be able to eb seen and have the money by new year , so long as no unexpected bills show up in between , in the mean time im gonna look into charites and funding etc and see how i can get the money for the battery pack for my chair
i lve on a hill which has a couple of steps so an electric chair that is not light and foldable is not an option for me as it needs to be able to be pushed up the hill or steps that are outside , i can swap to a more accessible house in the future but apparently that can take years not only that but i am happy where i am, , so in short id rather the pack for the chair im crossing my fingers that me and support worker can find something

appts tomorrow

so i have an appt tomorrow with the knee dr to see what the damage to the soft tissue is problem being its at 8:30 i have to be up at 7 to make sure i get it and ive not been sleeping till the small hours  but itll eb worth it to hopefully get a bending knee brace ready for pantomime
then its pantomime practice after that 10-3 and that should keep me busy
then its coffee with a couple friends so i wi be busy and out al day and although i look forward to these days i dead the pain and fatiuge i get after them
then its therapy group all day thurs so no time to recover till friday but friday i ont have anywhere to be until 5 pm so plenty of time to rebuild myself then
i need to fit the dr in somewhere as i have injured my back and im not getting any better but no idea when i can fit that in
im looking forward to being in pantomime again as it  gives me something to focus on and some sense of purpose

pain

in alot of pain tonight my ankle is stuck subluxed my spine is really sore from yesterday and my hip where i have bursitis is also sore passing the time and distracting myself with some good tv planning on going to the gp tomorrow to get some more pain killers and get him to check my back over wishing i could get some sleep but painsomnia is getting the better of me spent some time with the chinchillas and chatting to friends online keeping busy is the most important thing , pantomime rehersals and knee specialist is on wed and therapy group is on thurs so i have a very busy week

i have heared so many stories of people having notes on their car for using a disabled badge and not 'looking disabled' for walking out of their car or some even getting out of their car with crutches or sticks and all having notes that say they should stop 'cheating the system ' 'be gladthey are not disabled' or wods tothat effect or some even being abused in the street for 'faking being ill' i think its horible that people who are already unwell now have to fear that someone will do this to them or say something to them for them using an aid which helps them live their life , i do not yet have a badge i am filling out the paper work so that i can go out with my carers instead of sending them somewhere because i cant walk that far or the area is not safe for me to walk , or s not wheelchair accessable or for any number of reasons i wont be able to go to cetain places and nee to send someone for me , i find it horrible that this may bring a whole new range of problems from members of the public . i dont know what needs to be done for peoples veiws to change people who are disabled are not always visibly disabled in face so many are invisible illnesses , and unless you can see inside someones body who are they to judge and determine who is sick , it is hard enough to get access to these aids you have to fight tooth and nail to get them and then you get abuse when you finally win the fight to get what you need to live your life , more needs to be done to educate the public on disability and illness but then will they even be willing to learn

sunday post

today was an ok day but when out to get my medication for the week something in my spine clicked an have been in pain ever since so spending the evening in bed wrapped up with blanket and hot water bottle , have my carers coming tomorrow to help me clean and get the shopping done which is good cause it means i dont have to do anything between now and tuesday

hand and finger problems

so my little finger at the knuckle where it joins my hand will not stay in the socket tonight the finger curls up and then dislocates sideways then the tendon down my hand tightens up causing it to look weird and also hurt ive tried putting it back and it keeps popping out not sure how im going to get it to stay in but i need to go to the pharmacy tomorrow so i pick something up there and see what i can do
feeling a bit fed up tonight trying to muddle through till morning hoping my mind will settle down and i can get some sleep
played with millie and molly which cheered me up a whole lot heres hoping that tomorrow is better

my chinchillas millie and molly these girls are my life 

molly at the back millie at the front 

               millie back ad molly front 

                millie left and molly right 

awareness ribbons

current sittuation

currently im in several splints full time due to a recent fall i dislocated both ankles and m knee and am being followed up in a couple of days i may also have torn a ligament in my knee which means my knee cap is ot staying in the correct position and is causing me a fair bit of pain , i am waiting to be seen by a spinal specialist as i am having some problems with my back and i am waiting for a sped up gastro appt due to my gastro problems getting alot worse very quickly , mentally i am doing better than i have been in a few moths though i am just trying to keep myself busy with things i enjoy doing even if they are at home

me so far and about me

about me
i am 24 i live in south wales (uk) i live alone in a flat with support in the community and have 2 chinchillas called millie and molly
i enjoy spending time with my pets and friends doing craft activities listening to music and watching movies
i am terrified of spiders and creepy crawlies
my favourite thing to do is have a bath using a lush bath bomb and get into a freshly made bed
about my illnesses
i have ehlers danlos syndrome type 3
this is hypermobility type because of this i dislocate my joints easily and daily and am often wearing splitns or in and out f plaster , this is due to faulty collagen because of this i also suffer from dysautonomia, GRD , scoliosis bladder problems and other gastro problems which are still being investigated i suffer from chronic pain because of this and am in a wheelchair part time ,
this illness by far is the one that takes its toll the most the pain and mobility issues can really take their toll
i have neurofibromatosis type 1
this is a genetic disorder that causes tumours to form on the nerves in the body i only have 2 tumours one in my gastro system and one on my skin on my back the gastro tumour can cause some digestive problems but the nature of these is that they are hard to remove so unless it grows its easier to treat the discomfort with medication , as a child i had high blood pressure due to this illness and also seizures i very occasionally still have seizures but the high blood pressure corrected itself when i hit my teens
brittle asthma , this is a severe type of asthma that only effects 5 percent of asthmatics this means im in hospital regularly for asthma attacks that can escalate very quickly this is very scary and fristrating but im currently trying a new medication to see if it helps i often do well on a new med for a few months then my asthma wil become ucontrolled again but im keeping my fingers crossed
underactive thyroid this is self explainitory i take medication get regular blood tests although this can also make me tired all the time make my muscles tired and ache and when low i can have problems with my iron and b12 levels
scoliosis im currently waiting to see a spinal surgeon as my scoli has been causing alot of problems so watch this space

my story

my story suffering from multiple chronic illnesses
i suffer from multiple illnesses many are chronic many are genetic and this is my blog about my journey hoping to meet others along the way
i suffer from
ehlers danlos syndrome type 3
neurofibromatosis type 1
brittle asthma
underactive thyroid
scoliosis
GRD
then i also suffer from mental health problems