The (not so old) Crocks Cafe -Part 2

formaldehyde_perfume

too heavy for parcel2go ... Well.. My battery is 16kg so i added a bit to 20 and thats what it said, it's only approximate but I don't know anywhere that delivers that big a package.

I'll just have to see what they say tomorrow morning.

hannahO_2

There are couriers delivers nationwide from about £12 (upto 20kg).

formaldehyde_perfume

The place where I got the scooter was worse than useless. There's a problem with the computer inside and if it needs a part it could be weeks.

However, I then went to my local (tiny) disabled shop and asked if they had scooters that come apart to rent and they do!!!!! It's a £250 deposit and £50 fee for a weeks hire but I was facing the prospect of not going on the trip, now I can. Turns out the tiny place on Ely Market Street is the sister shop of a huge mobility centre in Bedford and anything you want they're likely to stock and things are delivered every wednesday. This makes me really angry at myself as this guy is great and I should have taken my business there. Also, he said their engineer comes in every wednesday and since they stock the make of scooter that I have, if there are any problems with it I can take it to him to have it repaired.

I have my reumy appointment tomorrow which is very annoying as my mum will have to play taxi (whereas I could've gone on my own with my scooter) but luckily I don't have any other appointments this week and with the option of renting (if mine isn't back by then) my day out on saturday isn't ruined

ash4becks

hey all hope everyone is well or weel as they can be the hms was confimed for sure score of 5/9 but cab sue thinks i have a good chance for the higher rate but has went though as a reconcideration not appeal due to dates on letters etc so fingers crossed for that, gp still thinks its fibro but as treament the same pretty must will not refer me for second option which i half understand, but iam doing well and out of flare up about flaming time to lasted about 3/4 months , pain still coming and gooing but i can deal with that just

sorry guys not been on for a while been sorting the tip of a flat out with mam helping me 16 black bags of rubbish its canny tidy for now not sure how long that will last though but iam trying feeling ok, things a bit up and down iam learning to pace which is annoying, but i have got a stick now which is helpful

but i got my reward for all the physio at home and got to take my dog out for a walk wasnt far but it felt like heaven just on way back home from vets but didnt get bus right home for a change but went though park as a shortcut bumped into a puppy lab and another lab so the 3 of them are running around like little holigons ella comes back black but i loved it , iam sure she knew i couldnt do this much she was coming over me to see i was alright with out asking me too

i was in pain for having to stand for more than 5 mins but was so worth it i really miss my walks with her i was in bed for 2 days afterwards then slept for 16hrs the next few days afterwards, to see her play like a pup ment everything to me but i dont think i can do that much but she knew she couldnt go far or play up , what a dog i no in my heart or hearts i shouldnt really have her but that babe is my like and iam proud of her for the way she is but i need to give that back to her a save up for a chair or a scooter so i can take her out more

BCS whats happened x

Trialia

Glad to hear you're doing all right, Ash! *hugs*

I finally decided I could take neither the weird behaviour nor the price of going over on my existing mobile phone and contract (randomly disconnecting, going back on the browser when I hadn't pressed back, etc.) - my bill last month was £40, and I hadn't gone over my call minutes that much, it was just that expensive to call my dad on another network when I was out of minutes. So now I have the first new new phone I've had since my first mobile when I was 12 years old, an HTC Legend, and it is so much of a help to me already!

I've never had a smartphone before, and I get confused and lost when I am out, I forget appointments and why I'm in certain places, and my phone playing up was causing me to cut off calls unexpectedly, which would make me panic when it involved "official" purposes. I am paying £30 a month for this new phone and contract, which has three times as many free minutes and an actual phone (the old one was second-hand on a SIM-only contract). Less than my bill on the old phone often was, and this way it's highly unlikely I'll go over my minutes (since I actually don't make that many phone calls outside of family because of the phobia).

With this phone, I can find my location on GPS (without having to tell anyone). I can make notes that will pop up and sound a notification to alert me at certain times, like to take my medication. I can leave myself notes on certain apps about why I've got to go somewhere and what I've got to do there. I have far more available options in terms of GUI accessibility and adaptations, and the touchscreen keyboard is easier on my hands than my old push-button keypad. I can even read e-books on it, which saves me saving up to get an e-reader, which I'd been planning to do as it's lighter than carrying around a paperback in my bag every time I go out. In short, I love it, and it's saving me money, and I'm really glad to have it, no matter what people may think to look at me with it! :P

On the negative side of things, dislocated my finger hard this afternoon after getting shocked by static electricity and jerking back - bent it very quickly against the wall. Fortunately it's the index finger on my left hand and I'm right-handed, but it took hours to get it to go back in properly, and it's still sore. On Saturday, one of the teeth Manchester Royal Infirmary were supposed to extract 18 months ago broke in half, so I've been chasing up their individual PALS unit this time to find out if I can get them to get me an appointment at last (I've been calling every couple of months, and never managed to get through to Maxillofacial, who were supposed to be handling it...). They took my number and said they'll chase it up and call me back. Hopefully, this time, they will call me back!

How's everyone?

ash4becks

Trialia wrote: »

Glad to hear you're doing all right, Ash! *hugs*

I finally decided I could take neither the weird behaviour nor the price of going over on my existing mobile phone and contract (randomly disconnecting, going back on the browser when I hadn't pressed back, etc.) - my bill last month was £40, and I hadn't gone over my call minutes that much, it was just that expensive to call my dad on another network when I was out of minutes. So now I have the first new new phone I've had since my first mobile when I was 12 years old, an HTC Legend, and it is so much of a help to me already!

I've never had a smartphone before, and I get confused and lost when I am out, I forget appointments and why I'm in certain places, and my phone playing up was causing me to cut off calls unexpectedly, which would make me panic when it involved "official" purposes. I am paying £30 a month for this new phone and contract, which has three times as many free minutes and an actual phone (the old one was second-hand on a SIM-only contract). Less than my bill on the old phone often was, and this way it's highly unlikely I'll go over my minutes (since I actually don't make that many phone calls outside of family because of the phobia).

With this phone, I can find my location on GPS (without having to tell anyone). I can make notes that will pop up and sound a notification to alert me at certain times, like to take my medication. I can leave myself notes on certain apps about why I've got to go somewhere and what I've got to do there. I have far more available options in terms of GUI accessibility and adaptations, and the touchscreen keyboard is easier on my hands than my old push-button keypad. I can even read e-books on it, which saves me saving up to get an e-reader, which I'd been planning to do as it's lighter than carrying around a paperback in my bag every time I go out. In short, I love it, and it's saving me money, and I'm really glad to have it, no matter what people may think to look at me with it! :P

On the negative side of things, dislocated my finger hard this afternoon after getting shocked by static electricity and jerking back - bent it very quickly against the wall. Fortunately it's the index finger on my left hand and I'm right-handed, but it took hours to get it to go back in properly, and it's still sore. On Saturday, one of the teeth Manchester Royal Infirmary were supposed to extract 18 months ago broke in half, so I've been chasing up their individual PALS unit this time to find out if I can get them to get me an appointment at last (I've been calling every couple of months, and never managed to get through to Maxillofacial, who were supposed to be handling it...). They took my number and said they'll chase it up and call me back. Hopefully, this time, they will call me back!

How's everyone?

cheers hunny, no idea if tooth is hurting but guessing so stuff i found was amazing was oragel numbs the nerve i used it when wisdom teeth were coming though and when had toothache and i can eat easy when using that just before , funny you say about densists refusing to treat you mine was just really intrested in hms and i passed on the forum details and said he would read up on it just incase , hope its sorted soon x

SingleSue

Good news on your phone Trialia - I would be lost without my phone as I put all the appointments in for all of us and it reminds me of the appointment 24 hours before. Very handy and no missed appointments since I have started to use this feature.

Sounds like you are making progress Ash and such good news you have been able to go out with your dog at last, I know how much you missed it (plus the fresh air always makes a person feel a lot better).

My news - well not much really, eldest is telling me I need to accept that I have a disability and that I need help, I'm not quite prepared for that as yet. Hydro has now finished, not sure if it did any good as the bad days are now virtually every day with only a rare good day but I enjoyed it nonetheless as I love being in the water and at least it was a relatively pain free time when I was in the pool (well after physio passed on the message that I needed to bend my back the other way after being stood up, so needed a rest between exercises for me to do that - without that, my back seizes right up and I am unable to move).

Had physio today but as it has been a bad day (but not a bad bad day), she didn't want to do too much as it would have taken only a little more time on my feet or move me around too much to make it a bad bad day. She has also said my main problem is the laxity of the ligaments etc, apparently my knees move in ways they really shouldn't as does my back! Goodness knows what her reaction would be if she saw how much my ankles and toes move.

I am now full time on the crutch, without it, I last only a few minutes before the pain really kicks in and beggers me up for the rest of the day but this brings extra problems as my right wrist was already in a poor state (unstable wrist joints) and it is not doing it any favours..at times I am not sure what is worst, the pain from the rest of my body or the pain in my wrist from having to use the crutch whilst walking (or from bashing the bony lump that has now developed), thank goodness I am left handed or I would be truly beggered.

I keep hoping this is just a passing phase and it will magically get better....but I fear it may not be.

Trialia

ash4becks wrote: »

cheers hunny, no idea if tooth is hurting but guessing so stuff i found was amazing was oragel numbs the nerve i used it when wisdom teeth were coming though and when had toothache and i can eat easy when using that just before , funny you say about densists refusing to treat you mine was just really intrested in hms and i passed on the forum details and said he would read up on it just incase , hope its sorted soon x

Actually, it isn't hurting at all, which makes me think that the root may have died. Not a good sign, but at least it's not added pain. Jaw subluxations hurt more...

Lucky! Yeah, nobody around here cares to know. I offered to direct the last one to the article on ineffectiveness of normal dental anaesthesia in HMS/HEDS patients and she just didn't want to know.

SingleSue wrote: »

Good news on your phone Trialia - I would be lost without my phone as I put all the appointments in for all of us and it reminds me of the appointment 24 hours before. Very handy and no missed appointments since I have started to use this feature.

...

I keep hoping this is just a passing phase and it will magically get better....but I fear it may not be.

Thanks - I do really love it! The only negative thing I've found is I have to take the charger with me everywhere, just in case, as internet use drains the battery very quickly. But that's not so bad, as the charger itself is quite light

*hugs you carefully over the rest of your post* I hate to be the bearer of bad news, but HEDS/HMS tends to be progressive in that sense. I use at least one walking stick every day. Once the damage is done, so far there isn't much they can do to help fix it. Hopefully, they'll figure something out in the near future...

My wrists are probably the least hyperflexible joints I have, so I'm lucky in that sense, but have you thought about trying an underarm crutch? It might push your shoulder upwards a bit, but it'd be less rough on your wrists, probably. Another HEDSer I know swears by them as her wrists and fingers are so easily damaged... it's a trade-off, though, and only you can decide if it'll work for you.

formaldehyde_perfume

My mobility scooter was sort of delivered, but before he came round he tested it and found another bit was wrong HOPEFULLY it'll be here on thursday, but I've missed the day where I can hire the mobility scooter from the other shop (as he said he'd deliver it tuesday so I said I didn't need it on wednesday) so if I don't get it before friday evening my weekend plans will have to be cancelled and I'll be HUGELY !!!!ed off.

Also, the reason for the fault was water damage yet they knew we were going to store it outside and sold us a cover. The only thing I can think of is that the cover isn't big enough to fit all the way over the part which was damaged so that could be it. There are other problems with it too but I'm too tired to explain, I had a pretty bad nights sleep.

On the plus side I *think* ESA have sorted out my payments and I should get my back-dated payment in my account later today. I also have 3 appointments for acupuncture at the local physio centre, I'm really hoping it will help my back become more tolerable so I can do more of the exercises my usual physio would like to give me.

SingleSue

Trialia wrote: »

Actually, it isn't hurting at all, which makes me think that the root may have died. Not a good sign, but at least it's not added pain. Jaw subluxations hurt more...

Lucky! Yeah, nobody around here cares to know. I offered to direct the last one to the article on ineffectiveness of normal dental anaesthesia in HMS/HEDS patients and she just didn't want to know.




Thanks - I do really love it! The only negative thing I've found is I have to take the charger with me everywhere, just in case, as internet use drains the battery very quickly. But that's not so bad, as the charger itself is quite light

*hugs you carefully over the rest of your post* I hate to be the bearer of bad news, but HEDS/HMS tends to be progressive in that sense. I use at least one walking stick every day. Once the damage is done, so far there isn't much they can do to help fix it. Hopefully, they'll figure something out in the near future...

My wrists are probably the least hyperflexible joints I have, so I'm lucky in that sense, but have you thought about trying an underarm crutch? It might push your shoulder upwards a bit, but it'd be less rough on your wrists, probably. Another HEDSer I know swears by them as her wrists and fingers are so easily damaged... it's a trade-off, though, and only you can decide if it'll work for you.

Thanks for that.

I'm not sure an underarm crutch would work any better as my shoulders are as hypermobile as my wrists and also easily damaged (although they have not stiffened up as yet, I can still do very weird things with my shoulders and they clunk into and out of joint all the time)...so it would be down to what is damaged more/hurts more.

Hmm......will have to think more about it.