caring and sharing

disgrantled carer

Mon, 25 Aug 2008 07:57:54 GMT

you may remember i wrote a few weeks back i was applying to get away for a few days sometime. i wrote a long letter to my carers assessment social worker (casw in future,its bit of mouthfull ) asking if it was possible to get any help towards a break,financial help that is.when i had my assessment earlier in year,which as my early entries told i had waited for,for 4 months,the casw promised me several things. mum would get a voluntary visitor, that took 3 months. yes C comes now,and i am grateful to her. but it took ages to get set up. i was promised help to fill in forms, i had a letter from the person concerned,he was busy but would be in touch. never heard a word. as i already have said i had a spell of self denial and never did anything about it until the other week. and that was because of my MS nurse giving me different organisation to go to. never heard a word from other. i was promised help from carers organisations,and yes i am now registered, never had to use them yet but they are there. and carers grant. casw told me there is a grant carers can apply for every year,up to £200 for help with things like breaks,doing hobbies etc. i asked for help towards a new bed for mum as hers was broken,and it was making my job hard to make it. i got £150 nowhere near enough for a new bed. so i repaired her old one,and we bought a nice thick new mattress for her with the money. cost £170 but mum is comfortable. now she casw told me this grant is paid every year , just apply,say what you want the money for,runs from april to april. so thats what i had asked for my break. carers grant to enable me to get away for 3 days. hadnt heard a word until wednesday.

i had gone to doctors,got home,mum said social services rang, will ring you later this afternoon. never did. next morning i went up shop to get papers,came home they rang again said mum will ring you lunch time. never did. finally she rang me friday. a new social worker i have never met before, asked me how things were, and when did i want to go away? promising i thought. mid october i said. ok she said,i can arrange cover for your mum,extra carers to get her food etc. blah,blah. no word about money. then she said,oh i am reading your letter, you wish to know if there is any financial help.well there is this charity you could apply to,i will send details, ermmmm just sec.i said i applied for carers grant, oh she said,you have to get in touch with work and pensions carers allowance is nothing to do with norfolk county council now................. whoah, i cant GET carers allowance, the benefit i am on i cant get it. i applied for carers GRANT. i explained it all to her. and she had never heard of it. said maybe it was a one off? no i was told every year. maybe it was a social grant,they have to be repaid but....................NO,ITS A CARERS GRANT. long and short, i had a small bit of paper come, with this charitys address on and phone number to apply to see if i can get any help from them, she will look into carers grant,but couldnt find anything on her computer about it. goodbye mr lake.

i went on the website for carers. and i cant find anything about the grant either. still got the slip that came with the cheque,and sent it to the social worker,but it does look like thanks to cuts in social security funding, carers grant has gone. along with any hope i had of getting away. i havent got money to waste on taking a holiday. i only applied because i thought the grant was available. working on what you never have you never miss,i guess i am not really too surprised. but i am just one carer. there are thousands in the country. and for some, that grant, to be able to go away for a little break is a lifeline. i shall apply to the charity, but i am unpaid, i get little help, surely more could be done to help the helpers? we save this country tens of thousands of pounds,by providing care that otherwise would have to be funded for. a caring society?? take care all. many,many thanks for all the lovely comments and emails i got over the MS entry. mort

a grave mistake part 2 the MS bit lol

Mon, 18 Aug 2008 00:18:33 GMT

MS 2 simple initials, stands for multiple sclerosis basically,wont bore you with details it means many lesions or scars. it is a disease of the central nervous system where the bodies own immune system turns on itself,stripping the myelin off the nerves (think of myelin as the insulation,the nerves as the bare cable as in an iron or kettles flex say. ) and causing "short circuits" in the body. these short circuits are the cause of pain,loss of sensation,all sorts of unpleasant effects. depending on the number of lesions and where they are. at the last scan 2 years ago i had 4 in my brain,5 on my spinal chord something like that. was in a daze when i was told. doesn't matter, pretty sure theres one or 2 more now.

lets just clear up one or two misconceptions. YOU DO NOT DIE FROM MS. and before my lovely friend lucy, day-to-day-life-by-Lucille4364 , starts screaming at me,let me just explain. her beloved and much missed son alan died tragically in his early 40s from complications caused by MS. he had a really aggressive form and sadly it killed him. please visit her journal and read her moving tribute to him,and how it affected him. makes sad reading. and lucy, you have been more of a help to me than you will ever know in my coping with it.but noteveryone will go on to get that bad.

1 in 4 people end up in a wheelchair,or paralised in bed (like poor Emma,Wendys 21 year old daughter,bless her.i asked jland to pray for her,as she had a bad chest infection a while ago.she got over it. one day sadly she will not. ) but that means 3 in 4 people will not. many people have MS,and never even realise it.its not found until after they die and there is a post mortem. several different types,if you really are interested please visit the MS societys website the link is on my sidebar. EVERY MS SUFFERER IS DIFFERENT. How i am now,doesn't mean its how i will be next year,or even next week. i could go downhill very quickly,or,like my next door neighbour,remain pretty mobile for many years. WE ALL SUFFER IN DIFFERENT WAYS. now, i am a very private person,so some things i have'nt told before,except in my "black"journal. the private one i keep to scream in . its not for public viewing. not even in my name. now i am going to tell it all.

MY SYMPTOMS. vary from week to week,these are what i have had/have now/never bloody want again.

loss of feeling in my hands and fingers,at first it was just the right now its both. think pins and needles, or better imagine plunging your hands into stinging nettles that burning sensation?? i have that all the time.

spasticity. it means a jerking, uncontrolled spasmodic "twitch" i get it in legs,and left shoulder. i have woken nearly screaming in agony. Pain in my legs, a dull "ache" that wont go away. my right ankle is bad. very also the left but not so bad. MS causes ankles to swell a lot of my pain is also due to arthritis in them as well. balance problems, i do come over dizzy often and have had 3 falls. im sure i told you lucy. lol sorry but some things were too painful.

optical neuritis. please god never again. a sharp stabbing pain from "behind" the eyeball. thankfully it cleared up fast. "the fuzzies" my term for it. actually it was a friends in chatrooms term for it she has it as well. i nicked it sylv lol. i sit here sometimes,and i cant think. i cant type as i cant seem to know where the letters are, usually if im tired. it passes but its scary. wonder why i dont post as often as i used to?? these new tablets do help though.

incontinence. hide that one up,no-one may notice, it has happened 3 times,with MS you can lose control of your bladder that spray i used last week will stop that bit too well lol its very embarassing. also you really cant just wait to go to the toilet,if you want to go you GOT to go,no choice.

impotence. well, lets just say " fings aint what they used to be " and leave it at that. and yes viagra will help.

swallowing problems. sometimes food,tablets etc.get stuck,the nerves in my throat that control the muscles dont always work properly. speech problems. not bad but i do slur my words if i talk a lot or i am tired. depression. ya think? lol

so sounds horrendous doesnt it?? there i lay, twitching,screaming,peeing, except i am here typing this journal. yes my ankle hurts,yes my legs ache,yes my hands are numb and me bloody back is killing me. but i can walk,ok i do use a walking stick. (jaynee hun if you reading this,can i have ya pink one??? lol) i can care for my mum still,ok sometimes the house doesnt always get hoovered/dusted etc. but who cares? its reasonably clean. i stillcook,just being very careful how i hold hot tins. i still can drive, if i feel very bad,we don't go out in car. common sense. i still do my garden. ON MY GOOD DAYS. and thats the thing. there are days i really cant do anything except feel sorry for myself. so now,i dont. mum understands now better, and we get along from day to day we help each other.

so, anyone who has got MS,or just diagnosed with it,please don't despair. hopefully you will have a long and useful life. just take things easy, and don't do what i did for these past 7 months or so. pretend its not there it is. but it can be tamed. at least i am going to have a damn good try. take care all and thanks for all the comments on my editors choice entry. even if 2 new readers did assume i was female. lol you all help,more than you can realise mort

a grave mistake part one

Sun, 17 Aug 2008 23:00:23 GMT

amazonian rain forest maybe???

whats that lurking behind all those weeds???

this is how i found my dads and granddads graves yesterday. Hindolvestone church yard and the graves have featured before in my journal, but this time i was horrified. i honestly had no idea where my grandparents graves were at first. dads was bad enough. now,ok it is my fault you can say,i haven't been to do them in ages,mainly because i have to load the mower into car,drive 17 miles unload,cut graves repeat. and i really havent felt well enough to do them. i didn't yesterday,my ankle is killing me,but i loaded car,had got some nice flowers i had bought, and went to hindol to do them. i was there nearly 2 bloody hours. absolutely exhausted,and seething. i keep cutting 4 more graves besides my families,1 of which is next to dads, the family of that persons grave know i am ill. and would have seen the state of my dads grave, so,dont you think that just maybe,they could have cut it for me when they cut theres last week or whenever?? that was all neatly cut. oh no. so,i am afraid i didnt cut the other ones i normally do. i was too tired. maybe its me,but i was rather annoyed.

anyway,got home,had quick sandwich,and straight out into garden. yes,full moon this week,lol. i had to take down baskets and bags. they have flowered themselves out. i still have 3 baskets and 4 wall baskets with just the fuschias left in them. all the busy lizzies and petunias were removed. and they still look good. sometime i will post a pic. i also, as i was doing it,cleaned the boarder up,removed all the dead bedding,and planted 4 geraniums i had in pots. looks clean and tidy. should do,i took 5 barrowloads of rubbish off. collapsed in chair after i can tell you.

today, i leapt out of bed with a song in my.......................ok i cant move lol. who said serves you right mort?? you quite right it does. my ankle is trying to turn into a football,my legs ache,i didnt sleep too good,as i was in pain. so why did i do it??? bear in mind i did cook a full roast lunch today,but thats all i have done,i went to bed after lunch. slept nearly 3 hours. so why?? why do it all at once??

the trouble with MS,is its such a deceptive disease. when in remittance,and i am feeling reasonably ok i can get on and do stuff, bearing in mind i have 3 crushed discs in my lower back, and had a discectomy 15 years ago, so pain is something i live with every day. but. and this is where i went wrong back in january, i thought MS was just another ache,another pain,one i can ignore,like i can mostly with my back. take things easy,i will be ok. no worries . what i hadnt realised not until a few weeks ago is,MS moves the goal posts. just as you think i can cope with this,it changes.hits you with something else.

I really havent said too much before now about how it affects me. oh,you know i have pain,swallowing troubles bad ankle. well,i had called this journal "caring and sharing" because its what i do, i care for mum 24/7/365. it was supposed to be about my life caring for her, and i thought well,its turning into "mortys got MS" so i deliberately have tried to keep a lot back. i had a good moan in an earlier posting. i didnt want to come over as being "brave" in caring for mum whilst having MS. then a comment from guido made me stop and think,maybe i should speak more of the MS, because maybe,out there in jland there is someone reading this,who has just been diagnosed,or who has MS and isnt coping well. so, bear with me for a while. lets just explain what this vile disease is,how it affects me,and where i am going from here. i shall post this now,part 2 will follow shortly. please bear with me. take care all

thankyou jeanette

Fri, 15 Aug 2008 22:58:19 GMT

jeanette of Jeannette's Jottings is the guest editor on AOL Journals: Magic Smoke this week. and as one of her choices she picked my journal. i am one of the guest editors picks. how lovely is that? I want to say thanks to jeanette, no idea why she picked this load of ( sometimes ) self pitying whinging but she did. and i am grateful to her. if you are a new reader you are welcome,please leave a comment, and cheque under mat. thanks. lol.

i have been writing this journal since last october,it was origionally intended as a means to let off steam,i was waiting to have a carers assessment done, that took ages i recall. it seems to have changed its direction since i was confirmed with MS,just lately i have been self pitying, and instead of mother and my caring for her its changed to me,and how the MS is affecting me. but i am still caring. today we went to fakenham and just did the weeks shopping,the lady from disability rights rang me yesterday afternoon,and asked if i minded if she came then instead of today, just caught me as i was then going to cut the graves. good job she did come then,that form took 2 hours to fill in. as she said,i would never have done it if it was left to me. now i wait and see their verdict. she did say i should be entitled to extra benefits,also said couldnt believe i had never applied for it before. my back trouble alone was enough in her opinion for me to get it. we will see, lol. also, today i have really bit the bullet. and rang for an application form for a blue badge disabled nasty word. it means that you cant do things that able bodied people can. and i realise, that that is how i am now. never mind. many thanks once again to jeanette thanks to you all,who read this and have left me lovely comment, take care all

few pics of garden

Fri, 08 Aug 2008 09:34:07 GMT

just a few pics,been really pleased how garden has looked this year,going over a bit now, but still looks lovely.

this begonia is 4 years old,this and a yellow one is all thats left of a pack of 32 i bought 4 years ago as plug plants. keep them dry through the winter and start them off in the spring.

yes lucy,they do look nice lol. actually the smaller ones do taste a bit better. a bit.

stiffkey salt marshes the sea is about a mile over them,when the tides out you can walk out on the sands for miles. best you dont get caught on them when the tide comes in though.

i have got a lady from disability rights coming to see me next friday, apparently i should be claiming other benefits and i havent. hope everyone is having a lovely summer whatever the weather take care all

yep,that WAS summer.

Fri, 08 Aug 2008 09:13:58 GMT

so much for summer heat,as i write this its frankly peeing it down,gale force winds blowing,and it looks like bloody november. ah,british summer time at its best. although it should get out later the forecast for the next few days is ermmmmm rain. which is a shame.Wells next sea has their carnival day tomorrow,a lot of hard work goes into it,and its sad if its ruined by bad weather. still,there are a lot of holidaymakers about,albeit looking rather fed up and bedraggled. here in Stiffkey we have a camp site down near the marshes,on what was an old army training camp during World war 2,frankly i would rather keep at home lol,but it was full last saturday evening when i took a walk. pity them today though.i think i would go home if it was me.

I saw Dr.M last thursday, he looked at lindas reccomendations but has advised that one of the 2 she wanted me to try,another pain killer, has side effects which he thinks will make me feel very ill,and as at the moment i seem to be doing ok on the ones i am on,we decided to give it a miss. the other,i have been trying. it's a nasal spray to inhibit the need to go to the loo in the night,MS sufferers tend to have trouble "holding on",or to put it another way,if ya gotta go,omg too late lol. a couple of times i have had to get up in the night,quick,and then the pain in my ankle and legs stop me going back to sleep,so linda thought it may help.not too keen on reading the leaflet,but i thought heyho,2 squirts,1 up each nostril, off to bed out like a light next morning,i was up at my usual time 5.45 omg,but tracey comes at 7 and i do like an hour of peace and quiet on my own first, into bathroom,and oooo dont want loo. in fact no sign. which is strange. and why are my ankles so swollen,pain in the right one much worse. cut long story short,i ended up taking one of mums water tablets, i rang Dr.M at 11 and said,i cant wee,lol ah,he said think 1 squirt in future will be ample for you,best nick one of mums diuretics. so,spray is sitting in its box and its keeping there. i was in agony.lol.

yesterday i went to Kelling hospital,linda asked the speech therapist to see me, and i was with her for 45 minutes. she had a long talk,and explained that the left side of my mouth is slightly weak,i have a slight tremor in my lips,and my tongue is not quite so mobile as it should be. explains why i slightly slur my words specially when tired; or yack a lot. also,i swallow a sip of water twice,as my swallowing reflex is weak,which is why i sometimes get problems swallowing,and explained i do have to be careful with certain things i eat. all in al,she is quite pleased to tell me i dont have too much trouble at the moment,and is ringing me in october to see how i am. i notice i slur my speech,but others often dont,unless i am feeling tired. like now. been doing bit to much i think. baked this week,cleaned,cut grass,blah blah. taking it easy today,just going shopping to fakenham in a short while and thats it.

lastly heres a few pics, the hanging baskets and pots still look lovely,and i have been really pleased how they have done.

i am going to add some more in another entry, just in case i lose this entry i am closing it. take care all.

summer at last ?

Sun, 27 Jul 2008 22:28:43 GMT

for a change the title of this entry isnt a crappy pun, summer has arrived at last. and it has been HOT. unfortunately,MS plus hot weather equals one bloody tired carer. but it is so lovely for the holidaymakers i dont mind. our shops in this part of north norfolk rely heavily on the tourist trade,and if they arent coming because of bad weather a lot will close. indded in Fakenham,a small market town inland,many shops have already gone. its getting a ghost town. if t wasn't for Tescos in the middle of town i think fakenham is going to soon be a town of charity shops and estate agents and 3 of those have closed there. says a lot about the housing market.

i took mum friday to do our shopping and the town centre was deserted,mind you i am sure many people were taking advantage of the glorious weather and went to the coast. least it made shopping in the supermarkets a pleasure. mum enjoyed the outing,makes a change for her to say she is hot,normally mum never feels too hot,she has the last few days.

on thursday i went and saw linda the Ms nurse again, she wants me to see Dr.M.now he is back off his holiday,as she wants me to try another 2 medications,i must say the 2 she put me on seem to be helping,and she has increased the dose of the baclofen by half a tablet a day. no side effects so far,and i do seem a bit better on them.we had a long talk, and all in all she is quite pleased how i am coping. i see the consultant next jan,although it is possible i shall be called before then if he wants another scan done sooner.

all week tracey has been on holiday,so no early morning carer for mum, although we could have had a replacement we decided against this,as last time we got 3 different ones and to be honest for 15 minutes a morning it isnt worth getting up so early. i managed. i always do. although o am going to write to my social worker,and ask for a few days respite if they will cough up some cash. a 3 day coach holiday would be lovely. where to? Yorkshire if i can always wanted to visit there and never been. sort carers out for mum she won't want to go in residential care,and i think it is the best solution. hopefuly i can get something sorted out.

the heat has made the tomatoes ripen fast and i have put 3 bags in the freezer. bloody things still dont have a lot of taste, even the smaller ones. all in all a big disappointment this year. the pots and baskets look lovely still,i have to water them every day in the hot weather or they soon flag and look awful. hopefully they will go through the summer really have been a picture.

i still arent reading many journals, but i am glad to see indigo has made an entry. good news hun,you have been missed. lucy i always try and comment on she is a lovely caring lady,if you never read her journal take a look and leave her a comment day-to-day-life-by-Lucille4364/ also june always asks how i am doing her journal MIDNIGHT is one i enjoy. who would be a mum lol and zoe Domestic Chaos i am glad to see is back on top form. i PROMISE fingers crossed lol i will get round to reading the rest of you as soon as i can.

well,it is 11.25pm and it reads 25 celsius in here my fan has been going all night,thunderstorms are on the way though. i hope everyone enjoys a great summer,take care all

eyes down

Sun, 20 Jul 2008 23:46:39 GMT

i havent posted for a while, and let me just say also,neither am i reading or commenting on many journals. please dont be offended anyone if i havent dropped by. truth is i just havent felt like it. theres a jolly little side effect of MS,called optic neuritis. and ive had it lol. how to describe it?? hmmm think,sharp stabbing pain behind the left eyeball as though some malicious imp with a pitchfork is jabbing away at it. somewhere near. in laymans terms. it bloody hurts. my vision was impaired to, bit blurry.so kept at home. luckily by thursday it had calmed down ( thank god it only lasts a few days, although its bad tonight again.) and i was able to take mum to the chiropodists. she was in heaven,lol had a hunky male chiropodist this time. nice bloke, mum liked him and he is pleased how her toe has healed. the gout is still bad in her toes though,it always will be i think now. on friday i took her to the health centre to have her blood taken and i was pleased to find that although Dr.M is away,lindas letter had been read by Dr.E the other partner and he has prescribed me 2 new tablets to take baclofen instead of the gabapentin i have been taking and a new one,pregabalin i shall soon rattle lol. i am pleased tosay,unlike the last tablets linda tried me with these seem to have no side effects, and the pain in my ankle and legs is a lot better, so hopefully they are doing some good. ( i did read the leaflet with both big mistake lol. though i am intrigued,as preabalin does say may cause "changes in sexual interest" as a side effect. isnt Gordon Brown kinda hunky?? ya think?? lol ) we then went to fakenham and shopped. got home early fish and chips too lovely.

yesterday,although eye was hurting it doesnt stop me much. ( and it is only a temporary thing. hopefully it wont get worse.please. ) i decided to have a clean,the weather is lousy,cool wind,cloudy,showers, and i couldnt get out in garden, so i washed kitchen floor and bleached sink, bathroom the same, and then i shamppoed the carpets. my vax was going for ages. lovely clean carpets. and a very knackered mort. today i just cooked lunch,roast chicken, you should have came to lunch,plenty spare.lol and then yep went to bed until 5. sleeping a lot better as the pain in my legs is not waking me. touch wood.

so, i shall get around to reading your journals my friends,sometimes my alerts work,often not. one that did was indigo of Raven's Lament sadly i note she too is ill,and is taking a break from journalling. Indigo i for one miss your wonderful entries but know exactly how you feel. let us wish her every good wish, and may she come back soon. you are a lovely person Indigo. God bless hun. as for you all,thank you for your kind comments. they help me more than you can possibly imagine.

just one last thing, those tomatoes i am growing?? nice picture last entry? big red toatoes?? tasty mmmmmmmm. they are bloody awful. lol. my neighbour gave me the plants,he had them given him,so neither of us know what variety they are. suffice to say its a shame as neither of us want to EVER grow this variety again. they are tasteless tough skinned prone to "greenback" as they are such big fruit. you get the picture?? lol it maybe the weather has a lot to do with it,if we got some hot sun,it may help the flavour. oh well, i put some in freezer today, i keep them for cooking. one tip. tomatoes freeze well,and are great then in stews ans casseroles, i just take out how many i want, hold them under a hot tap,and the skins just peel away easily. see, cookery and garden tips. well, i shall be back again soon, eyes permitting, until then take care all

MeSsed around

Thu, 10 Jul 2008 23:50:01 GMT

well i went to see the MS nurse, at 3pm today. was with her over an hour, she was so helpful, wants me to try 2 new tabets,to help the pain and make my nights sleep better. i wake up after 3 hours,in a lot of pain legs very bad. also my ankle is playing hell. also is sending me to a speech therapist to help with my slurred speech i get sometimes and the swallowing problems. all in all, very helpful. i have also "volunterred" somehow lol to help a new chap she has just got. my age,just diagnosed and having trouble coming to terms with the idea. know that feeling. glad to help if i can. she is writing to my GP outlining these things, and to get him to change my tablets. unfortunately he is away for the next 2 weeks and i see her in 2 weeks time to see how i feel on them. so we will see there what happens.

as i have written before mum has a carer come in every day,tracey, to wash her and help her dress,30 minutes every morning,and a shower once a week. all has been well mum likes her,until this past 2 to 3 weeks,she has been getting to mine at 6.50 whips round and gone by 7.10. her firm is putting so much onto her she cant get round. so i have not been to happy. now,unfortunately mum mentioned this to my friend pam,when she rang mum last friday. even more unfortunate pam was being blunt drunk. she drinks,a lot. doesn't admit it mind. nooo not me mort, don't drink. now normally she wouldn't have taken any notice when mum said about Tracey. shame she wasnt normal. she rang traceys boss. her friend works for the firm tracey works for. and said were they aware tracey wasnt doing her job, etc. i had a phonecall from the boss,saying was this true? i said ok,she had been getting here early,and leaving before time,but mum liked her and it was the firms fault she had to rush round. anyway, because of pams interference mum now has only 15 minutes every morning,with 30 minutes on a thursday for shower. boss said as she was getting done in that time, that was all that was needed. i was furious. anyway,when tracey came monday i explained. then went over to pams. and told her in future to mind own business. i am writing to social worker, and complain about mum losing 15 minutes. it was social worker who decided on the 30 minutes, and they are now paying for 30 instead of 15. see what happens. i do wish pam stopped drinking.

lastly a few pictures. these show the baskets and tomatoes they have grown so much.

take your pick lol first should be ready by the weekend

take care all

spread the word

Sun, 06 Jul 2008 11:59:47 GMT

i have mentioned this journal before, but if you have not yet read her can i please ask you all to take a look at blog of a disaster prone woman! written by maudlin mawther. also known as karen. she deserves more of a following, and please leave her a comment. thanks all. just getting lunch ready,roast beef and yorkshires,roast potatoes,new potatoes,broad beans,peas carrots cauli and courgettes. orders now being taken lol. have a good sunday take care all. karen you owe me a pint next time i am in suffolk lol