This is random updates in order of newest to oldest :)
This was the first Easter that I could not have a chocolate egg for breakfast. My poor swallowing is worse in the mornings so I can only manage yogurt for breakfast. My swallowing problem used to vary but it has been a problem every day now for a while, another symptom that crept up on me & got worse without me noticing.
I found some hair brushes on sale & bought 3 of them, I have to have ones with no handle but that are easy to grip & untangle my hair but without me needing amozonian strength to get the tats out.
These are a couple examples of how I have to adapt my daily life around my illness & disability.
I have just re-activated my Go Fund me page, hopefully I will be able to raise enough money so I can get my wheelchair in 2017.
It would be wonderful to be able to see the Christmas lights, do Christmas shopping in real life rather than online, visit Carlisle Christmas market & so much more outside of the house related activities :D
I am feeling particularly faint & ill today:( I am having to lie down for hours, every time I lift the head of my bed I keep fainting.
On the plus side my friend came over yesterday & we had a nice chat, my brain was in & I was feeling ok :) I needed a power-nap after she left but I am grateful I was feeling less ill for the visit :)
Mum update 17/9/2016
This is the link to an article that appeared in the News and Star about Sammy.
I have been having a bad patch again, my kidney infection is flaring we think, I am trying some different antibiotics & they do seem to have helped, my mum helped me have a bath today , so I am appreciating feeling clean :)
I have not been up to doing anything requiring me to use my arms or hands, or do much more than lie on my bed watching television. I have caught up with a lot of TV programmers :) One of them is Bones & there was a quote from one of the main characters that resonated with me: "At the end of the day I want to be someone who's given more than they've taken- Booth." (Bones S11 Ep18 ) That is what I desperately want too.
Thank you to Routledges at Brampton, their collection pot contained £17.65 for the fund, much appreciated.
13th July 2016
Sammy's Fund has just received a £200 donation, from someone who probably wishes to remain anonymous, THANK YOU SO MUCH!!!!
It cheered up my day, as I was feeling overwhelmed by everything this morning, not having a good day. Thank you so much.
Sammy was very poorly yesterday, here's hoping she improves this week.
Sammy isn't so well today, we had to postpone a visit from Sammy's best friends' younger siblings and their Dad, a family friend.She was too faint and ill to be anything but stay lying flat. Never mind, next time! At least she felt better yesterday
5th July Sammy isn't quite as better as she was, but not back to unable to do anything but lie down.
4th July Sammy's had a better few days, not feeling great, but a bit better than semi-conscious, and she's been able to sit up in bed for a while each day.
1st July We heard yesterday that some doctors are trying to pass Sammy around like a hot potato again, wasting more precious time. We're so sad. As always, mostly funding issues. :(
Although Sammy's neck is even more painful than usual, she's managing to hold her head up!
21st June 2016
Sammy doesn't like people to see her looking really ill, but don't be fooled by the pics of her when she was well, or having a better day, this is how she often is, feeling awful and in pain.
19th June 2016
We all watched a dvd last night after a nice meal - early Father's Day celebration and "farewell" to James, but poor Sammy suddenly became so ill in the afternoon! Her autonomic dysfunction suddenly kicked off - she felt even more ill than usual, terribly faint, freezing cold, her lips were so pale they were the same white as her skin, numbness in various parts of her body such as her face, heartrate dropped, her cognitive function was really low as she was barely able to st...ay conscious etc. As usual, we have no idea why it happened, and it's very frightening knowing that the local hospital wouldn't have any clue what to do (the London consultants just assume "all doctors" know about dysautonomia and have proffered no advice), She eventually managed to join us by sheer force of will, and see the film after hours of feeling dreadful, as she was so disappointed at the thought of missing an evening of all the family together. She had the recliner as flat as it would go, and we had to leave the light on so that she wouldn't pass out, but the adrenalin of the Bond film made her a little bit better eventually. This is how bad her life is, she's 26 and was always so independent as a youngster, and should be a teacher by now, but it's come to being a big treat to join the family out of her bedroom to watch a dvd . She deserves better than this, she is such a kind, thoughtful of others and caring woman!
20th May 2016 Sammy is a tiny little better on the pills, but they haven't helped with the digestive problem which is the most dangerous part of her illnesses :( No donations for her room now for months, and several firms (which obviously I won't name!) have said they can't donate materials.....
12th June the good effects of the pills have almost completely worn off, and the gastroenterologist doesn't know what to suggest to try to avoid peg-feeding. I'm very concerned :(
The pills are wearing off and not being so effective :(
6th March 2016
We got back from London on 23rd Feb, Kev accompanied me for the whole fortnight as I was too ill to manage by myself and Sammy needed all the support we could give during all the tests and consultations. Sammy had more tests in 2 weeks than she'd had in ten years, some of which showed up new problems - she bore everything with good grace, bravery and stoicism as always, she is awesome! She's on a trial of new drugs, but the Profs couldn't work out what else is causing her to be so badly affected. We really would like to be able to access private healthcare with specialists who know about her rare illnesses, and eventually maybe get abroad for further treatment. We are further down the road, but need specialists who can give her more time for conversations about her particular case.
8th February 2016
I'm going to accompany Sammy to her hospital stay in London, and my husband will come down for the first week - we're trying to get charitable help for accommodation costs, as we can't afford them. A friend kindly donated £100, thank you!
Don Lawrie up to 11lb weight loss and £1,515 pledged towards new wheelchair, thank you!
Sammy has an admission date to a London Hospital on 16th February, fingers crossed she may get tests and treatment that will help some of her problems.
3rd February 2016
Don Lawrie has now got £1,405 pledged towards a new wheelchair for Sammy, £50 of which was already donated on this site. Thank you so much to him, and to all who are donating via him. He has walked 104.5 miles, and lost 11lbs now, which is great.
Sammy had a very bad attack of gastroparesis a week and a half ago, it was very distressing for all of us, especially when the local hospital do not know what to do for her. She is a little better, but having to eat only tiny amounts of food, or she feels even more very sick than usual. We're waiting to hear when she will be admitted to a hospital in London, which is in the pipeline, maybe on 18th February. I'm approaching charities to help out with accommodation costs for me to stay down there with her, as she had a very bad time of it last year when she was in a different hospital in London last year.
A very kind gentleman called Donald Lawrie is raising funds for Sammy's wheelchair by walking 600 miles in 6 months! If you'd like to sponsor him, please message me on this page or Sammyshealthfund page on Facebook. Many thanks to him! This is some of what he wrote:-
As many of you are aware in the past couple of years I have lost over 100 pounds and walked over 2000 miles. This has literally changed my life, I thank everyone
for their great encouragement and belief in me. For the next stage I would like to use my weight loss program to raise money for Sammy Armstrong, a special young girl and friend of my daughter, who suffers from severe health problems detailed below. My challenge over the next six months is to lose sixty pounds and walk over 600 miles. Should I fail the challenge I will match all donations made…..
Thanks for your support.
Don (Failure is not an option….) Lawrie
4th Jan 2016 Sammy managed a couple of times over Xmas to sit in her riser/recliner and socialise a bit, though she is spending more time feeling unwell. Haven't had enough donations to make it worthwhile to make our donation to EDS UK, as a few pennies seems pointless, will wait until there is a decent amount.
1st October 2015
Sammy is feeling really poorly, so I'm helping all I can on the website/fundraising front. We've just donated 1% of September's donations to us, to EDS UK, to the general fund.
17th August 2015
Sammy's health has continued to decline, and I haven't had much time to post of here. Please look at the "Get involved" section for our latest project.
Sammy feeling very ill again, and I'm nagging the doctor's to try to get something done - it's like pushing jelly uphill :( Have had a few donations, but we need to try to get someone rich who can afford to donate enough for some private treatment!!!!
Sammy was on iv antibiotics over Christmas, some problems with canulas etc, too long to go in to here, but the medics seemed a bit more keen to actually help this time. I'd researched which antibiotic Sammy had tried in 2010 (took many phone calls), and it seemed to help. GP was still insisting that they could "manage" her conditions, so had to reiterate that she needs to see people who actually know about her illnesses first!!!! Sammy remains stoic in the face of everything, though before the antibiotics she felt quite down about feeling so very ill for so long without a break.
We had a meeting with the GP, senior partner, practice manager and representative of Cumbria Commissioning Group at home with Sammy present. It was very difficult to make headway and get them to admit what the NHS cannot do, they refused to put anything in writing! Something seems to have made them listen a bit more, however, so we'll see!
It has been over a year since I have done an update! I have since celebrated my 26th birthday, yet another year I have been a prisoner in my own home due to my bad health. I managed to watch a film & consume some Birthday cake with my family but I can not wait until I am well enough to go out somewhere to celebrate my Birthday!
I have just gone over the site & updated some information, some of which was depressing saying how little I am able to do now & what small achievements would make me happy, such as being well enough to bathe more often, or manage to eat & drink enough to prevent loosing weight & being dehydrated.
My mum has been updating my Facebook page more regularly.
I had one appointment with a private specialist doctor in London & he let me try two different medications, one which he prescribed & I am still taking. At first the meds helped a lot & I was able to do two things a day, and not be shattered the next day! But the positive effects slowly wore off & now they are only helping a little, still so happy I am on them though as my cognitive function & weakness has definitely improved, I can now write this all in one go, lift the TV remote with one arm & other small victories.
The London hospital visit proved that I am not like the usual patients with Autonomic Dysfunction, that doctors annoying assume I am! And that there is medication out there that I have just not been allowed to try yet. The other one the doctor let me try enabled me to see clearly for the first time in 6 years!!!
My family & I's main push at the moment is to get me into my Grans old bedroom, which has an en-suit bathroom, as it is getting harder & harder to bathe & travel from my bedroom to the toilet & back, without fainting. There are photos on my Facebook page of the progress: See 'Social Media' tab at the top for a link to my Facebook page.
If you are reading this, thanks for checking in & caring, I hope you can help me.
My insomnia & really bad so I thought I would spend a bit of time doing something useful while my brain is more in, I will try to get to sleep again later.
As I said in my last post my gastro problems have declined again, I feel sick after I eat anything & my digestion is getting slower & slower. The pleasant dietician who came to see me said that I might need a feeding tube soon.
My energy levels are even lower, which is hard to believe! I am having to ask for drinks to be brought through to me, which I used to be able to wheel through to the kitchen & get for myself. Even sitting up for a hair wash is becoming so difficult I am not managing it often.
My brain has been really on a go slow, I can't concentrate, my memory is even worse, I find it really hard making decisions, even just answering do you want to try a dumpling for dinner? (which FYI I did eventually choose 'yes' to & it was delicious.)
My lack of cognitive function is especially annoying as as my body is struggling to move I try & keep entertained by TV but I can't concentrate on my programmes or I forget the characters... It's not so fun watching a murder mystery when you can't remember who the suspects were, nevermind the murderer! Time to re-watch Buffy & F.r.i.e.n.d.s. I think!
You need your brain to be in to do a lot of stuff! Even researching lights for my new bedroom requires concentration, reading, remembering etc. I watched a documentary about the egyptian pyramids, which I could tell you was fascinating, but could I relay any of the fact? Nope.
I coloured in a My Little Pony halloween picture today (My hands managed to colour all the foreground, my back required putting back in place after & my wrist will probably be sore tomorrow but I did it.) Due to my fuzzy brain I ended up colouring in a pony orange, which was meant for the pumpkins! It is a good thing I realised & made sure it was Applejack, who btw is orange, and a fellow country bumpkin :D
My autonomic problems have got worse, again.
6 months ago I went down to London to an autonomic unit, on the NHS, to see if they could suggest treatment. They refused to try any medication & the only thing they suggested was 'rehab' which is basically trying to get my body back regulating the things it should be!
I was told to sit up with my legs down as often as possible to try & get my body to pump the blood back up around my body & not just pool in my legs & feet meaning I feel sick, ill, faint & eventually pass out.
I used all my tiny amount of energy to do this & despite trying my hardest I have only got worse. Another disappointment.
I have been having more problems getting to sleep too, & lack of sleep makes my POTS symptoms worse! I have tried a few tablets that are supposed to help me sleep from my GP but none of them helped.
My fatigue is worse & my back pain has increased; however I can't increase my painkillers as then my gastro issues are worse! My family kindly massage my back which provides some relief but the main problem is my spine & shoulders move out of place which causes more strain on the surrounding tendons & muscles. My shoulders are currently always out of place & I physically can not hold them back where they should be for longer than a couple of seconds. I do not know what to do & none of the doctors seem to know how to help.I am getting worse but they are not doing anything, I am getting desperate, I will try anything but they are being 'conservative' which apparently means leaving me to suffer & not doing anything >.<
As I said in my previous update my gastro symptoms are worse & I am only able to eat & drink very small amounts. My GP is concerned about my weight loss, I have been asked to write a diary of all the food & drink I consume & then a dietitian will be visiting me. I will come back & let you know what they say...
We are also currently trying to get help towards doing up a new, more suitable, bedroom for me. I am currently using my late grans wet-room as I can not longer use the family bathroom, but it is getting increasingly difficult to wheel back & forth between my bedroom & hers. I want to be in her bedroom so I can have an en-suit which would conserve energy & also stop me from fainting as much. It is also a bit larger than my current room so more room for my electric wheelchair to manoeuvre. (I think I spelled that right, spell check suggested romanoff! While I like the Black Widow & the Avengers are awesome, I am not expecting them to be in my new bedroom any time soon!)
Unfortunately the heating needs replacing, which is a necessity as I can not control my own body temperature (she says as a fan whiirs away in the background!) It also needs a new carpet & decorating.
I really need to move bedrooms but we need help. My dad is the only physically healthy one in the house & he is also the only one who can work. This means the more time he takes from work to help, the less money we all have, we can simply not afford the supplies & labour. My brother has offered to help move furniture (as me, my mum & my sister physically can not- I really wish we had powers of levitation!) but he lives away & has a low pair job of his own, he can only do so much.
My mum, although unwell herself (she has Crohns & we have learned more recently mild EDS & POTS) she has been asking companies if they would do any carpet, wallpaper, paint etc cheaper, we haven't had any positive replies yet but we will continue trying. Any help would be greatly appreciated as it would make my day to day life easier.
Captian's log, normal Jesus related date 10/7/2015. It is currently 2am & I have insomnia, Brian my brain decided to kick in now of all times! I thought I would make the most of it & reply to a few emails & do a quick update:)
I am currently trying a wheat & dairy free diet to see if it will help me feel a bit better... I think it might have helped improve my brain function slightly but nothing drastic yet *fingers crossed for more significant improvement soon!*
My general gastro problems are just getting worse, I now can't lie down properly after food (as I feel so ill & faint) as my food comes back up my esophagus! Meaning I have to lie down for at least a couple of hours after food. Which also means I can't do my rehab (sitting up with my legs down to get my blood flow to get the idea!) as much :(
...*reads old updates* I don't think I have let you know, I got out of the house :O To hospital, on a stretcher, but still! I will do another update about that soon :)
So yeah, worse gastro problems, oh & I have been having problems breathing, not upon exertion... which I have never had before, it is relived my lying down, which is kinda good, but sucky it is happening in the first place.
My fatigue is even worse, if that is possible, I am not showering as often as I want to, there is only so much dry shampoo can do!
Also my vision (as well as having tv static film over it, with splodges of lilac & yellow when I sit up for a while) now I have what looks like there is mist/fog in the room with me! The first time it happened I was watching TV then glanced at my bedroom door & swore & sniffed the air for the smell of smoke- XD thankfully no fire, just another vision symptom!
I have been watching a lot of TV as usual, I saw season 3 of Orange is the New Black, season 3 of Orphan Black & are currently watching the Bates Motel. I have not been disappointed by any of them :)
My POTS actually improves when I watch suspenseful thriller type stuff, or play tense video games, so that's a plus too! :D No idea the chemical, blood, neuro, related reason behind it, but I am enjoying it, it's a good side effect!
That reminds me I was reading the leaflet that came with some new medication I just got from my GP & one of the zillion side effects was ' a false sense of well-being' so I am sincerely hoping I get that side effect!
May 2015 hospital update:
<<<<<<Here is a real baby goat, I think they are extremely cute, especially the pygmy ones. Then again pygmy anything look cuter, pigs, hippos, even mini shampoo looks cuter than regular sized shampoo!
In May an ambulance came to my house & took me to UCLH & I stayed in hospital for 10 days. The food was actually palatable, but there was only one TV at the and of the room for all 6 of us to watch. The view out of the only window was also a large ventilation system & a brick wall; I wouldn't have known I was in London if it wasn't for the 6 hour journey there! On the medical side of things I don't really know how it went... OK I guess?
Summery:- they did tests, confirmed POTS, they gave advice, I now have a hospital bed, waiting to see if i can get a reclining chair form local OT & I have to try & sit up as much as I can every day. Two months later, no improvement yet.
Exposition:-The outcome was being told 'I have POTS' & given a list of things to do & things to avoid. One of the things was to use my electric wheelchair in the house more (as each time I fight fainting & remain upright my heart rate increases, so next time I stand it remember that last bpm & goes straight to that, then higher, so trying to stop that reflex cycle.)
The main things I have to do are- 'calf pumps' basically when I transfer from my bed to my wheelchair I have to go on tippytoes, then flat footed, then tippytoes for 3 times before moving. I also have to sip water before moving. I have to move about & wiggle my toes every so often when lying on my bed, which is easy to remember as I move anyway as I get sore with my EDS anyway. The main one that takes the most energy is try & sit up as often as possible each day. Like legs down, feet on the floor sitting (which atm I can only do for between 1-10 minutes depending on how bad my POTS is that day) the theory is as long as I lie down again before I reach pre-syncope (nearly black out) my body should get used to my body sitting up & chill enough for me to do it for longer & longer periods of time.
Things I have to avoid is anything which makes me tachy (aka heart rate go way high) & anything which takes a tonne of effort (apart from moving & sitting up obviously!) For example I now get help wrapping my eBay parcels. Showering is the only thing I can avoid, although my fatigue is ensuring I avoid it more than I would like!
There was a lot of other advice which I already follow, like pacing myself, lying down when I feel faint (really faint obviously as anytime I am upright I feel a little faint) & other stuff I cant remember because at the time I thought it was so obvious my brain has extinguished it from my memory!
As one of the rules is 'don't stand if you can avoid doing so' I am now using my grans old bathroom, which I guess is now my new bathroom! which is disabled access/friendly, so I can sit down when washing my face & brushing my teeth, which is nice, and good for my pulse apparently, so double win. Only down side is having to lean over both my legs & the sink more, so my ribs sublux every morning/evening, but a minor inconvenience as I can put them back in. I also have a raised toilet in there, which is a lot easier to stand up from.
I bought a cute heart shower curtain & matching towel & got Miffy accessories- toothbrush holder etc :)
The main nurses didn't know much about autonomic problems (apart from being a high risk of fainting) as I was just on a Neurology ward. However I did get a visit from a Consultant & a couple form his specialist autonomic nurses. The consultant didn't say much except my test results confirmed I have POTS, and that the rehab program he was going to suggest should be able to help me a lot. He said he has had patients who were bed bound just do the rehab alone & get back to walking & University/ a job! That was a shock as I didn't think I would ever be able to get that level of wellness. It remains to be seen but gives me hope.
The different people who performed the tests were very nice. I was unable to complete the exercise stress test as I got knackered too quickly. I managed the one where I had to drink and then go on the tilt table (I was concerned my gastroperisis wouldn't be able to handle the volume requested but I managed like 2/3 of it ^^,) but I nearly threw up when I got tilted upright! Her advice was to eat little & often, which I already do... & not to stand after eating, duh!
The test where they measured my pulse etc in relation to brain work was funny, I had been sitting in a wheelchair before my test, so my brain was in even less than usual & she asked me to start at like 500 & to keep detracting 14! she told me to go faster like 3 times XD
The specialists seemed to know what they were talking about, they said that a lot of my issues were just tacked onto the label of POTS. The consultant refused to try any new meds, & I still don't really understand why, but he said me might when I start the walking part of the rehab programme... a while away I think! (according to one nurse 2 or 3 years away)
The physio said my muscles aren't de-conditioned, which I think they are compared to before, but that probably because I used to be buff from working out so much! I do exercises to keep my arms & legs ok, so I am glad the effort is working. I was good in the force tests, where I had to push against her hand etc, but rubbish in any sustained effort ones. They have no idea why I (& others) feel weak as my muscles aren't. Holding the tv remote up to flick through more than 2 channels shouldn't require leaning on a cushion! She agreed I should only start EDS related physio after my fatigue improves.
Oh yes furniture! Two items were suggested. I now have a single hospital bed, which is a lot smaller than my old kingsize, but I got the extra long version :) The tilting has helped reduced my tachycardia before I go to sleep & first thing in the morning & the tilt function has actually reduced some of my EDS related back pain, which is great. I wish I had had one sooner to be honest.
The reclining chair has been a lot harder to get hold of. I had an OT 'assessment' then eventually got a chair to try but I felt like goldilocks trying baby bears chair! They can't be put on the chair risers, so I could hardly stand up from it, also when the foot part was raised my legs were dangling off the end, which made my knees was to dislocate. An OT is now looking into one that will be more suitable *fingers crossed* I really hope I will be able to get one & I am sure it would really help.
Two OT's have now suggest I buy myself a reclining chair, I replied 'if I could afford it I would!' I also knew that a 'regular/standard' sized one wouldn't fit me (they insisted on my trying it anyway) so that is even more expensive.
Each time I move I get light headed & POTSY, so sometimes when I transfer from my bed to the chair I can literally only sit for 30 seconds before having to transfer back into bed & lie down. But with the reclining chair I could transfer then lie down & wait for my POTS symptoms to reduce then sit up for a bit, then lie down again etc. It would also take a lot less energy.
I will update, possibly with photos, if I manage to get one :)
I think that is about it.
I have since had one telephone consultation with the nurse, where I told her I am maintaining motivation & I was managing to sit up for about 8 times a day- I created a chart, with stickers & everything :)
I have another telephone consultation with one of the autonomic nurses in a few weeks, I will have to say I have only managed about 6 times a day atm due to my gastro issues worsening... I shall see what else they will say.
Oh & they refuse to give an estimate when I might start to feel better, they did say that whichever symptoms came last, should improve first, so I am hoping my blurry/staticy/ vision improves any day now!
P.S. I had my first fresh Mc Donalds in years ,as when I was in the ambulance on the way back up towards home, I got one at a service station. It was scrumptious!
I am now 25! Celebrating it like any other adult, with Tinkerbell & Friends :)
June 2015: My mum baked & iced the buns & I designed them & stuck the Tinkerbell & friends wafers on.
I like the more recent Tinkerbell films (minus the ending to the Legend of the NeverBeast!)
I had a whole flock of fairies! My family & I consumed them over the next week or so, my mum bakes tasty cakes.
I chose two plastic toppers of Tinkerbell & her sister Periwinkle as my birthday is the day after my sisters, so we always celebrate together :)
I had planned on having a Domino's Pizza for dinner as a treat, but my stomach was not playing ball, so I had two cupcakes instead & had the Domino's another time. Fyi is was delicious!
My Little sister is now 21!
I am very happy to say I was well enough to sit up on my bed & decorate this cake for her.
A raccoon in a garden was her request, so this is what I produced>>>>>
My stupid hands had a bit of a problem with the quickly hardening icing but I am relatively happy with the outcome, more importantly Em was :)
I am managing to still remain positive & not give up on improving my health.
The internet & Netflix has kept me sane, as well as my supportive family & what few friends I have left. I have just had a telephone consultation with an (eds & autonomic specialist) Gastroenterologist who has said there is nothing more they can do to help my worsening symptoms, I am having trouble swallowing, feel sick nearly 24/7, can only eat small amounts of food etc but I am still enjoying sweets, those tiny Haribo bags are the perfect size for my gastroperisis having stomach! :D
Plus how can I be too sad when there is so much cuteness in the world, like this cat?!
I have surrounded myself in prettiness, the bed size change gave me an opportunity to buy new bedding & I have pretty posters all over my bedroom & are collecting a mass of My Little Ponies and geeky sci-fi & game related figures. :) I believe it was Mary Poppins who said 'A thing of beauty is a joy forever' ...Ok Keats may have said it first :D
I am now basically bed bound, I can not sit for longer that 15 minutes or so with my legs down. I spend most of my time sitting up in bed or lying down when I feel particularly dizzy &/or ill.
Not being able to get out the house for over a year has been very isolating, but to be honest as I feel so exhausted the prospect doesn't seem as fun as it might for more well people... It is more the small things that I find frustrating, not being able to go into a card shop to buy a birthday card, or not being able to go out & buy an ice cream on a hot day... actually I like my ice-creams all year round!
My kidney infection has flared up again but at least I was able to get the IV antibiotics staying at home again.
I now have a hospital bed which makes getting up & going to bed easier, not to mention is better for my posture & reduces my back pain during the day (as I have to sit on my bed due to blood pooling in my legs & my body just wanting to be horizontal) but I do miss the width of my kingsize bed :( But I suppose having a single bed means more room for my wheelchair... Oh yeah I am using my wheelchair inside all the time now, it was advice from the autonomic unit at UCLH & it has actually made a positive difference :) If only it had been recommended sooner!
I have barely been able to leave the house for the past 7 months, I am rather fed up.
I have managed to get out a couple of times to my osteopath, who helped reduce my back & neck pain. I also tried a trip to the garden centre but as I was going round I came over all ill & faint & had to go back to the car & go unconscious.
My insomnia has also been very bad, I think my body is confused as I am doing so little, but as my Dysautonomia is worse my adrenaline etc might be confused too. I need about 12 hours sleep, as I haven't been getting to sleep till about 6am I cant manage to wake up till tea time; It is so annoying.
I tried just getting up at lunchtime assuming I would be tired enough to go to sleep that evening, after 4 days I was wrong & absolutely shattered, I physically could not wake up again on such little sleep. I have like zero reserves.
I have tried some pills from the doctor that were supposed to help me sleep but none of them worked. Apparently I am not allowed sleeping tablets in case I get addicted.
I mean even if I got to sleep at 10pm & slept till 10am at least I could socialise & make phone calls etc, being nocturnal is so unsociable!
My brain is running out of power now, I have edited some of this website, one more new diagnosis on here & I have fixed some spelling mistakes as now Jimdo has spellchecker! :)
I really hope the rest of my 2015 is going to be better than this...
Mums update, 24th Nov 2014:
We're still trying to raise awareness about Sammy, but it's slow progress. Fighting the NHS as much as we can, also getting nowhere. I've written for hep to the Prime Minister and sent copies to various people, just waiting while Sammy still feels very ill.
Mums update. 2nd November 2014:
Sammy is feeling very ill, please help as much as you can with spreading the word about her! Join Sammy the Spaniel Puppy Fundraising group on FB, send a friend request - have a look at the tab to see the pic you're looking for, please!
Sammy had appeared in Aluminate, the newsletter about ex-students of The University of Cumbria, we hope more people will donate when they read it.
http://www.cumbria.ac.uk/AboutUs/Alumni/Features/Articles/2014/MeetSammy.aspx If you copy and paste this, it will take you to the article.
For the first time in three months my body and brain have decided to let me be sitting up for 5 hours so far today :) I am taking this oppertunity to do a little update.
I have been getting more ill more often and now havent been able to leave my house, apart form trying out a wheelchiair acsessable car, for over three months. I literally can not remember where the last place was I want, and I want to get out and Christmas shop!
Today I am better than I was, but that just means I am actually able to shower, sit up and engege in a conversation. My sister was performing at her school and i really wanted to go but I was just too ill to, it is so fustrating.
I have just created a new email adress which both my mum and I can use. I have a backlog of emails and other things which i have been too ill to do, and it just keeps gorwing. On a good day I am only able to do things for a couple for hours, (which is usually eating, and than washing or doing something fun like playing on my playstation.) so my mum is doing even more for me.
I have had another house visit form a GP who didnt know what is worng or how to help, and admitted beign admitted to the local hospital would be pointless as they would just 'observe' me but also not know how to help. The NHS has truely admitted they can not help me. My mum, and my usual GP, have been in touch with specalists in London who have said they can help, but only if I can make it down there, and pay obviously.
I think this Christmas is not going to be good, I only hope people are charitable and maybe by next Christmas I will have been to London, seen specalists, tried new treatments and be better enough to actually enjoy this holiday.
I hope I can get well enough to get dressed & don my xmas jumper, I would love get out to see xmas lights, I am hoping on sure luck as it is clear I will never get better until I can get specalist treatments.
I go to make the most of feeling slightly better, I'm gonna shave my legs and read a Buffy comic; oooh living dangerously!
My kidney infection flared up again (not that we really know how under control as it is usually) but I managed to get IV antibiotics (thanks to mum contacting a specialist in London & multiple telephone conversations).
My hand was sore but the nurses & I decided that I should keep the canular in as long as possible due to the multiple attempts to get it in there in the first place. I am glad I am not like my sister & fear needles, I was a squishy pin cushion!
My soft eds skin was not only being irritated by the canular but also by the plastic butterfly & tape to keep in in place! The pic is my hand the day after it was removed.
After not being able to sit up for a fortnight, for now I am able to sit up and go on my computer, little mercies :)
Mums Update, 5th October 2014
Sammy has been confined virtually to her room for two months now, she's getting sick of it! We need lots of money donated to get her into a specialist hospital for a couple of weeks to get more tests done - please pass her details on to anyone you know who might be able to donate! She is being very brave, but being this unwell for so long without a day of feeling alright is really starting to get to her :(
16th September 2014
Doctor coming out tomorrow to do a blood test on Sammy, as she is feeling so very ill.
Sammy is really feeling very ill, too ill to attend a hospital appointment in Newcastle tomorrow :(
11th September 2014
Today I got raffle tickets for sale in several places (see raffle tab) but Sammy is feeling very ill. She slept for 15 hours last night and still is exhausted. We don't know what part of her conditions is affecting her, but it is making her and us feel very sad. We need to raise lots of money to get her tests done - if you're looking at this, please pass the word on to friends and family.
All of Sammy's siblings have done the ice bucket challenge for her now, and Katie is also doing the Brighton Colour run with her fiance, his sister (also a Sammy!) and some friends, and the sponsership money is going to this fund - thank you all! Anyone else want to do the ice bucket challenge for her? Drop us an email and let us know!
28th August 2014
Dr has been out to see Sammy and confirmed that her kidney is very sore and the infection is flaring up again, trying new antibiotics, fingers crossed!
27th August 2014
Sammy is poorly again at the moment, we think her kidney is playing up again, so I'm adding a few updates for people who have kindly shown an interest in her and her struggles.
Please look on the "Raffle" tab to see our latest fundraising activity.
Sammy has now had some more definite diagnoses, from private appointments in London. Sadly, she has had to cancel three appointments with a gastroenterologist with a special interest in connective tissue disorders, as she has been too unwell to leave her bed, never mind travel anywhere :(
However, we are making progress, but it's a long, slow, arduous process.
She saw a neuro-cardiologist earlier in the year, who confirmed that she has POTS, but also autonomic dysfuntion affecting other bits of her. Where other people's bodies can regulate temperature, their hearts and blood pressure "talk" to each other, anything automatic, Sammy's body has trouble with. He also said she has a mast cell problem, which also causes all kinds of different symptoms. He needs to do tests to find out exactly which autonomic dysfunctions are affecting her, but they will cost £2,000. He looked surprised when we told him that the Prof she has been seeing for some time had not performed the tests already, but obviously he couldn't say anything against a fellow Prof. He prescribed some pills which help with her blood flow and stop her feeling so faint, which is great! The NHS here won't prescribe them, as thye cost too much, so we have to buy them, althugh the first lot were picked up and paid for by kev's very kind Auntie Pam!
She saw a specialist EDS physio, who was brilliant! She totally understood Sammy's health problems, spent one-and-a-half hours with us, and explained that the NHS physios and occupational Therapists had been treating her as though she had Chronic Fatigue Syndrome and is just weak through inactivity, grrr! They had been giving her exercises which targetted the wrong muscles, too. She understood fully that Sammy has become less and less able to do things, rather than that doing less has caused her problems, which we have been unable to convey to any of the many NHS physios that Sammy has seen. It was a massive relief that she understood, but made me very angry about the wasted years seeing physios who didn't have the expert knowledge about Sammy's conditions, and couldn't see that they were not helping. The EDS physio saw that Sammy has very stiff parts of her body, such as spine and pelvis, which Sammy has told all the NHS physios who all just said she was very flexible! She said that when Sammy gets her other health conditions under control, performing the new exercises will help - although it's a long road, as her body has twisted out of shape considerably over the past few years.
She also saw a Urologist with a special interest in her conditions, who has said that the reason her kidney doen't drain is very probably her autonomic dysfunction, not a blockage of some kind. He says she has a chronic kidney infection, which will need IV antibiotics when it flares up - which we have literally been begging for on numerous occasions when she has been at A&E in 3 different hospitals with renal colic. He explained that because of her other conditions, she will not show raised CRP in her blood, or a temperature, with the infection - despite having signs of a fever with alternating chills and feeling boiling hot, which is why the drs here would not believe she had an infection, and they never considered finding out anything further. Again, ggrrrrr! The infection has caused some kidney stones in the past, too.
He also suspects an auto-immune problem, and wants her to see an immunologist, and get various tests done. He wrote to our GP telling him what tests needed to be run, hoping to save us money by getting them done on the NHS, without realising, I think, how long she waits for appointments (three months minimum, usually six or more). He honestly doesn't know what it's like up here! The GP has told us that the tests he wants done are not available locally at all, so we need to try to raise the money for her to have them in London, privately.
Sammy needs the flexibility that being a private patient offers, as she often has to cancel appointments - if it was an NHS one, she would have to wait months before being fitted in again, whereas privately it can be only a couple of weeks - meanwhile, she gets more ill and disabled and more of her life just stays on pause. She has got so ill that she is not well enough to sit in a queue for possibly hours (up to 3 hours when they thought she had Lupus), then see a consultant (maybe not the named one, either) for ten minutes, when she feels so ill that she can't even think what questions to ask,then wait months to have a letter about the appointment. She is offered tests that the NHS just won't fund going privately. She needs specialists who will talk to each other, as her conditions are interlinked.
if she just had one problem, the NHS would be able to help, but her conditions are rare, poorly understood, interlinked and have had a devastating effect on her body and her life. she needs to get help before she literally can never leave her bed, as she has been getting more and more ill very quickly over the past two years or so. To be honest, if we could persuade someone with lots of money to donate, I think it would benefit Sammy enormously to be admitted to a private hospital in London, so that her being ill doesn't stop her from seeing specialists, and get all the tests for her different conditions just carried out while she is an inpatient. I can't imagine raising that much money, but I am trying as hard as I can!
When we have finally got Sammy as well as she can be, so that she has SOME quality of life, I intend to try to raise awareness in the medical profession of these terrible, life-changing illnesses, so that others don't go undiagnosed like poor Sammy. I'll also fundraise for the charities that fund research and provide support for other sufferers. She would not have a "hunchback" if she had had treatment for it while she was growing, and if she had received these diagnoses earlier, she would not have been allowed to become so very ill.
I know I'm her Mum, but anyone who knows her knows what a kind and caring, brave, stoic and lovely young lady she is, she deserves a better chance at life than this! Please help spread the word about her, and donate what you can.
03/08/2014: I have been to London for two priavte appointments, one with a specalist EDS Physio and another with an EDS and dysautonomia Urologist. They were the most helpful appointents I have had in a long time, and possible ever had. (Minus my diagnoses)
I have updated several areas of this site, and are now running out of brain power, so I will return here soon & say all about my London appointment.
It is all positive btw, so I want to thank everyone who donated, as without you I would not have been able to afford these appointments and get this help which is not available on the NHS :)
Update: Basically the urologist confirmed that I have a chronic kidney infection & said I would have to take treatment dose antibiotics every day, probably for the rest of my life. He said when the infection flared I would need IV antibiotics, which I have since had with nurses coming to treat me at home.
He also said I wounded like I might have problems with my mast cells, so should see an immunologist & then try a low histamine diet. My GP refereed me to a local-ish immunologist but they refused to see me!
The EDS physio was great, she really understood my problems & could suggest exercises that none of the previous physios I have seen on the NHS have suggested. One problem is my fatigue & POTS symptoms need to be more under control before I can do all of the physio required to help with my EDS problems! She said she is more than happy to see me again after I have my POTS problems under control.
I feel much more positive that in teh future I can get my EDS symptoms better managed, have less pain, less joints popping out & be generally stronger. However my POTS symptoms are a real hurdle to jump before I can start doing the suggested physio.
Damn you POTS! (said in quote planet of the apes style!) My family & I are going to nag the doctors even more to try & get my POTS under control. I shall let you know of any actual improvement.
Over the past month I have felt the worst I have felt in years, but also the best. Last update I thought I felt well, but this time I had a few days where everything was easier, even walking didnt take much effort. I made the most of it, I spent an antire afternoon with my best friend, went to see Malificent with my sister and went shopping with my mum! When I was chatting to my brother on the phone I was saying it was the most I had done in a week for years!
This gives me hope that I can feel better:) Whilst I also worry about what would actually happen if I stayed ill and could not get better, as the NHS doctors do not know how to help me. Legit concern. :S
Someone donated £1 to my fund today, she said sorry it wasnt much, but if everyone who heard about my plight donated a small amount, it would add up to a lot.
£8000 for an electric wheelchair seems a huge amount, and more of a hope than a reality at the moment. However there are £80,000 people living in my local city, not including the 100,000+ people in the surrounding countryside. If even quater of those people donated £1, I would have enough for my powerchair and numerouse specalist appointments in London, including traveling and accomodation! I would even have enough to buy extras to make my life that bit easier.
I cannot stress enough ANY amount donated will be appreciated.
Over the past couple of months I have felt the best I have felt in a long time (perhaps due to the right antibiotics- but its hard to tell), and also the worst. Which has given me hope:) but also confusion! >.<
I have been to see a specalist Professor in autonomic problems in London who has many different ideas about treatment and was positive that he could help some of my symptoms:) unfortuntly he needs to perform tests on me before he can decide what medication would be most appropriate, which will be more money. I feel more positive that I can feel better, its just a shame it has taken this long to see someone who can help.
It has been saddening to hear other EDSers and POTSies in the UK (& America but I wont go into that) are having the same problem of finding doctors who know enough about their specialality, and how to treat our varying symptoms.
Althogh it has been nice to talk to people in a similar situation to me, who understand. Who know that when I say I feel 'ok' it means being able to get out of bed, wash, and remain sitting to go on the laptop... Not the healthy persons standard of 'ok' chronically ill people have a new 'normal'.
I will share a recent coment I posted on a (closed) facebook group, in reply to somone who was feeling fustrated at their body letting them down:
"I know how you feel. I wanted/want to be a teacher and had to leave University after just a year as I was too ill, I have got more ill and disabled since and do not think there is much chance of me ever being in my dream job. I am only 23 and I feel like my life is already over. I have no idea what level of 'wellness' I will achieve in the future, and I have been in a state of flux for the past two years, and will continue to be in the foreseeable future (until I can see all the right medical peeps and get the correct treatment and get my health improved and stabalised). It doesn't help that the only good treatment I have got is through private healthcare, so I am having to scrounge money off people so I can get better. Never have I wanted to have money more in my entire life; and I am not even well enough to earn my own! Sorry to everyone else in a similar position, I don't think people understand how frustrating and saddening not being able to reach your potential is."
I have been in the cumberland news to raise awearness for EDS as well as ask for personal help. click the following link to see the full article: http://www.cumberlandnews.co.uk/news/cumbrian-woman-in-need-of-expert-medical-care-launches-online-appeal-1.1118334 (Where you can also see a photo of me and my mum, so you can join the host of people who comment on how similar we look!)
Since the article was published I have recived several lovely emails from well wishers, which I appreciate.
Some people were asking if I have been been screened for Marfans Synrome, which I have, and it came back negative.
Some gave me infomation about EDS, while I appreciate the gesture, I already know quite a lot about Elhers Danlos by reading books, reading online, and talking to fellow EDSers. Unfortuntly I know a lot more than most doctors, even the EDS specalists. So I need to know less about how I am effected and what not to do, and more about what I, and doctors, can do to get me to improve.
Others offered some alternative therapies that might relive some of my suffering. I see an osteopath once a month at Warwick square osteopaths in Carlisle, which helps with my back pain/stiffness. I am also going to try a couple of new techniques, so I will do an update after I have tried them.
Two people in particular who have offered their support and are currently actively helping me are: Claire Stevens and Geoff Brown, click on my 'A Special Thank You To' page to find out more. :)
I wasn't too ill on Christmas so managed to enjoy the day with my family and eat lost of junk food:)
Unfortunatly boxing day was spent in pain with a kidney stone trying to escape from my right kidney. However thankfully I was able to manage it by taking the maximum dose of off the painkillers I have at home, and did not have to do to A&E for morphine. *phew*
My sister created an awesome post on Tumblr to help raise money for me, it was well written (as she got all the wiring skills in the family) has over 1000 rebloggs already and has raised nearly £200!
I didn't get to do much xmas shopping as I have been too ill/ dizzy to go out, but I did manage to find some bargians online :) (No thanks to newlook who didnt deliver half of my items, then why I phoned up said they woudl refund me but they were all out of stock now- *dissapointed*)
I go to watch my Madagascar 3 DVD i got for xmas
At my physio appointment she asked how I have been since my last visit (3 months ago) and I said I have had 5 good days, and I was having one that day too, she said so mostly ill then... And I was like yeah, but I had two good days, then was my usual ill for ages, then was really ill in bed for a week, but then had another good three days!
It's like I just start to question if I will even be well again and god gives me a couple of days to restore my hope. Gotta admit my hope does sink in between well days, now I just hope Christmas is a good day! *adds to santa wish list*
So if my maths is correct that means that I am ill for about 94.5% of the time, man that's a depressing statistic.
I have recently been back to Bencham hospital to see the only physio near me and on the NHS who treats peopel sith EDS/ HS.
I was feeling well on the day, and my strength was good, so I got to prove that I do my exercises and that my strength is very dependant on my level of wellness- thus varies day to day.
I asked for my right hip as it is subluxing several times a day and it is causing pain. She asked me to demonstrate my existing exersises that I do, and said that I was very good at the one that works the muscle that is supposed to hold your hip/ femure in place (I was glad the effort of exercises showed) She suggested another but my hip kept subluxing and hurting, so she said not do do that.
So she dosen't know why my hip keeps trying to pop out, and can not suggect anything to help. I have put effort into doing a tonne of butt/ leg exercises that have not helped relive my pain at all *sigh*.
I said I am finding it no easier to sit up straight, and she said it could take years to improve my core muscles>.< but she did suggect a wobble cushion that might help me imporve them faster than the exercise ball alone. So I have just bought one- amazon- £30 - I hope it helps.
Following an appointment with an orthopedic surgon, I went to see a physiotherapist at Hexham, she was very througher and said that I have suprosingly good leg muscles, considering I am mainly having to use a wheelchair (at least my exercises are paying off). So on that front yay, and she was plesant.
On the negative side, she said that she disagreed with the surgon and that she did not think my fat pad was the cause of my pain and inability to striaghten my leg.
She told me to come for 4 ultrasound appointments anyway, just to see if it would help, as it woudln't do any harm.
It hasn't helped, I am due to go back next friday- and I think she said she woudl refer me beck to the surgon.
It has now been 11 months that I have not been able to straighten my left leg, and experience pain whenever i put weight on it. They still do not know the cause, or how to treat it.
My mum picked up my new weelchair cushion for me today, after waiting about 2 months I exitidly opened it and quickly realised something was wrong, 180 degrees wrong to be exact. As the NHS wheelchair services can not give me a chair tall enough or deep enough for me, it has been causing me pain, especially in my back and hips. They decided to try and compensate by providing give a thick cushion to make me higher, and to prevent me sitting an such an angle that is giving me pain in my hips (due to my knees being around my ears) it was decided that a wedge where the back is deep and then narrower at the front would destribute my weight more evenly. (I dont know if all wheelchairs are lower at the back and higher towards the footplates, or if it just because they have extended all of my wheelchair to its highest point.)
Either way there are instructions on the base of the cushion over which tell you how to place it, zip at the back, and ties at the back. The cushion isnt actually square, it is a trapezium, so the cushion dosent even fit on properly backwards. So I am going to have contact wheelchair services and tall them, but as they have to order it from somewhere else, wait for it to be spesifically made, then send to them, I am not happy waiting another 2 months, especially as I have a lot of medical appointments coming up where I will have to sit in the wheelchair for prolonged amounts of time.
*sigh* I wish you would get things right the first time NHS.
I have since phoned them and explained, and they said use it backwards, it fits, ish, so put up with it.
I just saw my Urologist (on the NHS) I was too ill to attend my last appointment, so haven't seen him for six months.
He refuse to have a telephone consultation with me. So I dragged myself there feeling awful and having to lie down on the beck seats of the car, when I asked why he had insisted on seeing me in person his reply was confusing, he said because he wanted to chat, I cautiously pointed out we could chat over the phone, and he replied that would not be a viable option...
I was sitting there feeling faint and hot so was in no mood for the usual small talk, I cut to the point: I asked what he had done in the last six months to find out what was wrong with me, asked other doctors opinions? Done any research? His simple and reply (that perfectly highlights what people with Chronic conditions have to deal with within in the constraints of the NHS) was "no"... and you wonder why I am trying to go privately, I may be "under the care of" a Urologist, but that doesn't mean he is actually cares at all.
So my Urologist has given up on fiding out what is wrong with me and has left it up to me and my GP to swap antibiotics an guess how to treat me. I need a private doctor that has more time, and more motivation (even if it is monetary) to find out what is causing my infection, and get rid of it once and for all.