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Hi All
Sorry I am not wrote for few days thought I would save it all for now.....teee heee
So what have I been upto, well I managed to get over the weekend just about.....and on Monday night my Uncle Steve and Lauren paid a surprise visit to me which was fab.......
They stayed for a couple of hours and we have a good chit chat and a laugh too, as you never know what's gonna come out of Steve's mouth sometimes but they both certainly cheered me up and it had nothing to do with the chocolates they bought me (honest!!) But seriously it was good to see you both and thanks again for coming
I woke up on tuesday morning feeling a lot brighter again, and although I don't want to jinx it I do seem to be having more good day than bad days at the moments and I think its a combination of me using my body more to do things such a housework and cooking, although I am pacing myself so where as before cleaning the flat would be an hour or so, it takes me longer as I will now polish one room, and rest, hoover then rest etc etc.......
It takes longer but I am actually doing something and at the minute I'm in no rush to get things done, it was only a month or so ago when Ferg was having to make my dinner each day before he went out as I couldn't but now I am making my own dinner on a regular basis, I know when you read this you may again think "Oh My God" but seriously this is my life at the minute and just being able to do little thinks is so moral boosting for me.
I haven't slept in the afternoon for a few days either, I have felt like it but when I have tried I have struggled to fall sleep which is frustrating but I am sleeping quite well in the night so I cannot grumble too much.
I went to town again yesterday, only to two shops as we just needed a few bits and bobs but again it felt good that I managed it without too much difficulty but I didn't push myself to far, I'm not too sure at the minute where the boundaries lie on what I can and cant's do so it's more of a suck it and see, I am in the comfort that if I do over do it, then I know I need to rest to fully recharge myself.
I am now drinking some Aloe vera juice 3 times a day as I have read that it is good for ME/CFS sufferers, so Ferg got me some from the health shop, it does not taste that great but sod it I will drink it, obviuosly it will take a while to see if this new "Medicine" works but will keep you updated.............!
So that's what's happened for the last few days in my life............today though rain permitting I will be watching the 3rd test match in the Ashes series and I hope its as good as the last one with the same result and maybe my mood is lifting as the football season will again soon be upon us.......................YEAHHHHHHHHH!!!
Oh and I am trying to rest up and save my energy to go out on Saturday night to a quiz/disco which will be raising money for a good cause in memory of a good man that passed away last year so I hoping even if it's for a couple of hours I will go.
Today's picture was taken last year and this was one of the 1st fish I caught :-)
Catch you all soon..............Ginge xx
Monday Monday...................bluessssssssssssss
Hope you all had a fab weekend...........I've had a mixed one really so I start at the beginning....(its always best!)
As the weather forecast was good for Saturday and bad for Sunday we decided to go fishing on Saturday....and for once the weather forecast was spot on............
We set off early at 7am and headed towards a new pool for us at Adbaston..........and it was lovely, the pool was on a farmers field and it was so clean neat and tidy..........and very peaceful, (I could have fell asleep!) When we got there there were only a few more people fishing and that is how it remained all day.
The sun shone, I had to get the suncream out...as you know these little gingers burn...and I felt really good and relaxed after a few rough days before hand......I took some pictures which I have not transferred yet from my phone to show you but I will soon.......
I caught about 30-40 fish the biggest being about 1lb so no clonkers for me this week, but still enjoyable anyhow..........I started to get very tired about 3 ish so we called it a day then a set of back home, had a lovely soak in the bath and finished the day with a Chinese..........
Saturday night I started to feel quite unwell, I have not felt like this for some time, I felt dizzy, extremely fatigued and achy.......maybe the sun took its toll....
I slept about 14 hours waking up about 8ish on Sunday morning had a slice of toast but felt really poorly still, I was very nauseous, head aches, my body felt like it had been hit time and again with a sledge hammer I knew I was going to have a bad day........so I decided that sleep was the answer and drifted off again until a quarter to 1.........
I woke still feeling the same so decided the best place for me was bed all day...........I did help with the Sunday lunch though as I have said before I always want to do something even if its small.
I had a long soak in a radox bath but nothing was helping, the pleasing thing though I didn't get down about it which is what I would have done in the past...I thought well I had a good day yesterday I just have to take the rough with the smooth, so I ate my Roast chicken lunch and rested in bed hoping that this morning would bring some better fortune
It has done, today I still feel a little yuk, but not as bad as yesterday so I have changed the bed sheets, hoovered and polished and done the washing............not all at the same time....I know I'm good but come on...:-)
I took plenty of rest in between and had myself a nice shower afterwards then promptly got myself back lying on my bed to try and recharge myself again...
So at the minute I am 50/50 I just cannot make up my mind can I.............oh well onwards and upwards as they say
Today's picture was taken in Novemeber 2008 about a month before I started to feel unwell, its me and my Unkee Markee who always gives me sound advice and words of support and I just really like this picture........xxx :-)
See you soon guys......Love Ginge xxxx
Hello Everyone...........
How are you all? I hope you are all well, I'm sad to report that I have a had a rough couple of days but I think the fog is lifted at last.
By my standards of the last few months I've done quite alot in the last few weeks, and I think it's just caught me up.
So the last two days or so I have done what I do best..........Rest and Relax.
I have been lucky that I have not had any really bad headaches for a few days, just odd little niggling ones, so I know one was due to visit me and it has done with a vengeance, again as I have said before it last for about 10 mins or so, goes then comes back, they are very odd, but very painful, like hammer blows and crushing pain and normally before i had CFS a couple of painkillers worked but nothing seems to shift them, the doctor did prescibe me some stronger tablets but they made my lips swell, and they didn't work anyhow, so I just grin and bear the pain.
Lying down seems to ease the crushing pain slightly, I just have to wait until it passes most days though, it just something that I have got used too.
Its strange really for me to say the next bit, when you have test after test, consultation after consultation a part of you wants the tests to show something not because I don't feel people believe me as I have almost got through that stage now bit so you can start to be cured with an operation or a course of tablets, I am sure other sufferers feel the same, as when nothing eases the headaches, muscles pains and fatigue it gets you down.
I am or I seem to being of late and I hope I don't jinx this now more good days than bad, I think it also helps to me being alot more positive than at the start of this illness, where I felt defeated before I even tried to fight back, now I understand that I just need to take the small steps not huge leaps to make a recovery.
If I had these few days days a couple of months ago I would have been sobbing and very frustrated but now I remain positive, understand that this will happen and not let myself get too down and dis-heartened by it, and I know that others can and now I can see an improvement both physically and mentally.
Maybe it's because i have age on my side, or my stubbornness is coming out, whatever it is I hope it stays with me and keeps me in the frame of mind I am currently in.
I have had two brilliant night sleep to, about 9-10 hours on both nights, and even though I tried as yesterday I was so tired and drained I haven't slept through the day.
I have even been a done some food shopping today, we always go Tesco (I'm a sucker for clubcard points!) but the last few attempts I made have been unsuccessful, and I really want to be able to get round, so today I suggested we went to Lidl which is alot smaller and we only needed some basic stuff for a change and I felt more confident I could get round and I did................again some of you may read this and think........."Yeah and what's the big deal"...........
The big deal is that this is the first time in 4 months or so I have managed to go around one shop, for about half an hour without making a quick exit back to the car, and although whilst I write this I can feel another headache come and go and I am tiring again, I am so happy with how I have got through the last couple of days and I know that in time I will gradually crawl back some of my old self................with added new and improved extras!
So will I be fishing this weekend??!?! I hope so but I will see on the day and Ferg is feeling a little unwell at the minute too, so we are looking after each other...........Bless xx
I hope the sun comes out this weekend and you all enjoy it whatever you do
Today's picture is a druken one with friends taken in May this year............I love these guys....
Catch you all in a few days............ Love Ginge xxxx
Hiya All
Hope your all good and well, especially those of you with kiddies and the long summer (well gloomy) hols have or about to start...............
Oh When I was at school the best thing was the longggggggg summer hols, I would be out playing football on the reck or Coton Fields with the lads all day everyday, a £1 or so in my pockets for a bag of chips, and then the change on a Happy Shopper bottle of pop and dozens of ice pops, so young and carefree, couldn't wait to grow up.............yes and "Older People" saying enjoy being a kid...........Oh how true that is.............
So after my "Great" weekend, I think it finally caught up with me, I had to be up early to go the hospital for 8.45 in Stoke, for my EEG, I got seen on time too which was good, as I was feeling so hot and tired, and a headache had come upon me....
The test was straight forward , I had about 20 electrodes stuck with some gel like substance to my head and then was asked to lie down, and she didn't have to ask me that twice..........as its currently my favoured position...I then just lay there for approx 20 mins whilst I had to open and close my eyes, I also did 3 minutes of deep breathing the the end of the test was to watch a light flashing in front of my eyes, which was slow at first, then gradually flashed so fast it looked like it was on permanently. I was about to grab my bottle of Evian, white gloves and whistle.....The light flashing was at about 5-10 second intervals.
It was painless really, the blood work is more painful, apart from my eyes watering a little but that's okay.
I will more than likely get the results along with the blood and lumbar puncture all together, so we shall wait and see.
So that's another test done and dusted just gotta go for the lumbar next............oh how that's gonna be nice..........
So I was going to try and go into Hanley after the hospital and even though all I did was to lie down I was shattered, so it was straight home for me, where I lay down for a few hours.
I made tea yesterday again though, more for Ferg than me as I made him a spag bol, and also mince and onions for his tea tonight, I don't like either of them. I've started to just take my time with things and gradually get them done, its not always the best way but at the minute its the only way for me.
I had terrible pain in my shoulder last night, I have it frequently mainly at night its like a knife repeatedly stabbing me, no painkiller really relieves the pain, I use the hot water bottle, it doesn't stop the pain but it does ease it, the only problem with that is that I get then very hot and it seems to make my symptom's worse..........Just can't win sometimes, but I always try and look on the brights side.
Today's picture was taken on 2nd December 2007, Liverpool vs Bolton.......for Fergs 40th B'day.........and its true You'll Never Walk Alone...............x
Catch you all soon.....Ginge x
Hello again.........
Well I left you alone all weekend..........one reason was that I had a quite busy one by my standards
First things first though, I received two letters from the hospital over the weekend the first is for an EEG test tomorrow again at Stoke hospital it where the study your brain through electrodes on my head........its about an hour long, that should be fun, study MY brain........te heeee.
The second is my dreaded lumbar puncture :-( that is two weeks Tuesday the 4th August again at Stoke, so the drive home should be fun....Although as I don't drive it will be Ferg, I may need to lie down in the back, I am so happy that they will take place very quickly from my initial appointment last week I was expecting a longer, just hope my physio appointments are as fast and then I can really begin my road to recovery, although I firmly believe the wheels are already in motion.
So on Saturday I woke up around the usual time and decided to venture into town, I have been a few ties since I've been unwell but never managed to get far, but on Saturday I was overjoyed that I spent almost an hour in town and went to 4 shops........Yourselves reading may think "BIG DEAL" but even though you are getting a small feeling from this blog on how I've been unless you are Ferg you haven't witnessed the pain and suffering so yes this was a "VERY BIG DEAL" to me and really boosted me again
I touched on it before but I appreciate everything in life now, the small things that I usually didn't notice and also how when I am better that I will continue too, as it has made me think about what IS important and was can take a back seat.
Saturday afternoon/evening I even treated myself to a few pear ciders.......In comparison to what I use to drink this was a real treat! I feel the affects quicker too so I have been staying away from it more.
Sunday I woke and felt fantastic, and decided to go fishing again, we went to the lakes at Seighford again as we can park right next to where I sit to fish, it is literally 5 steps or so, and Ferg sets up the majority of the kit so I just then fish, my arms tend to ache but the joy of fishing is that you go at your own pace so sometime I do just sit there and relax, I spent the day practically symptom free, its a strange feeling as I have grown so used to having aches and pain and fatigue I have forgotten what it's like to feel "Normal"
We spent the majority of the day out and just as we had decided to pack up I landed my biggest fish of my life!) (today's picture shows my prize....a 5lbs carp, and boy it gave me a great fight.........god knows what it will be like when I land anything bigger, the rush I get from landing a fish is unreal, fishing is something I never though I would enjoy but I love it, and today i think I am paying the price, but hey I refuse to let this illness make me a hermit and I will make the most of goods days and rest when its a little too much for me like today.
The weekend was rounded of perfectly with a nice warm bath, me getting some winnings back from the golf, after backing Tom Watson at 100/1 and Goosen 40/1 each way and a tasty chow mein.........well me and ferg were too tired to cook after the long day.
I hope you all enjoyed the weekend as much as me.........but I am going to rest up now as I have to be at Stoke Hospital at 8.45 tomorrow so I'll be up early for that..........
I'll catch up with you all tomorrow to let you know how I got on
See you soon..............Ginge x
Hiya Guys and Gals...................
How are we all??????? Hope you are all well, and none of you are suffering from this horrid swine flu that is swamping the nation, and if you have I do wish you well very soon...............
So have we been up to much the last day or so..............I had a very busy Thursday, well for me, and I am still in a really positive mood.............I'm even thinking of treating myself to a beer or two at the weekend..........well why the hell not!
I went the doctors yesterday and chatted to him about my hospital appointment and he also said he could see a more positive me than in recent weeks, well its not hard really as no tears!!! Yehhhhhhhh..........He did sign me off work for another month as we feel it better that I have the lumbar puncture and at least start the physio first before returning, I also went into work yesterday and discussed this all with them, and they are also happy with that, as the last thing I want to do is what I did before, think I am ok, then crumble again.
Everyone need to be realistic and understand that for me to make a recovery or semi-recovery which ever it may be it will take time, and this is my priority at the minute, and not worry or have stresses about returning to work, yes it will be tight financially for a while, but it's not as if I going out like I use too, I have enough clothes, so as long as we keep a roof over our heads and have enough food then I'll be fine and dandy.
I was certainly not happy yesterday when I went to see the nurse to have some blood taken as I just didn't realise HOW MUCH they were taking, as I couldn't eat before hand I felt very very faint, luckily I didn't, but felt a little rough all the same. I am sure they plan to sell my blood around Halloween time, they have taken enough!
So like I said I also popped into work for a meeting which was fine, although I really didn't feel like it as I was already out I thought lets just do it, as if I re-arranged would I be well then?? So I got through it and also saw some nice familiar faces too which was nice, I do miss work especially the people because they are great and you can always have a laugh and giggle even when its busy and changes take place, I'd defiantly rather be there than sitting at home any day, that's why I want to get back there.
I had a little kip when I got home though, I actually sat in the front room all day which is something I haven't done in weeks, as I like to be cosy and comfortable in bed, but I did nod off for an hour or two, which I must have needed.
I didn't really do any house work though, as I thought I had managed a lot this week compared to previous weeks and I don't want to be pushing it, I did make tea though..............(Yes Mrs.Kent again! te heeeee)
My Dad and Lorraine also popped up for an hour or so last night too which was nice, had some chitty chatter...etc..........and then I was in bed for five past nine and think I must have dropped off straight away, and didn't wake until 8am this morning................wow............and I still now feel tired, like I said I think the week and activities big and small are catching up, so today I am on the sofa again but will more than likely have a sleep at some point, whilst I watch the 2nd test and flick over to the golf..................and no despite some opinions.....these sports do not send me to sleep..........lol
AI also need to write the shopping list for Ferg............bless him............I do love him you know :-)
So I am going to try and remain positive, as my mind is feeling a lot healthier I just need my body to catch up with it as I think it is about 4 weeks behind at the minute.............
I hope you all have a fun filled weekend, hopefully I will get to have a beer or two, whether its at the neighbours party or in the house..........
Today's picture was taken on the booze boat in Mexico October 2008.............fantastic day with Ferg, Diane and George!
See you soon...........Ginge xx
Hiyaaaaaaaaaa How are we all????????
I hope you feel as good as I do at the minute, well more so in mind than body but its a start...................
I think the visit to the specialist has really lifted me, and all the positive messages I am receiving from you guys reading this is fantastic, and I have always know I am not alone but I am now feeling it and I hope this feeling remains.
I am so not looking forward to the lumbar puncture though, obviously I will go ahead with it I just hope its not a painful as it looks!
I had an earlyish night on Monday after the hospital and friends visit, and woke up yesterday feeling really good which was an unexpected but most welcome surprise, so after catching up with the news and sports news in the morning I decided I would do a few chores whilst I felt good.
I put some washing on, I did a small amount of washing up, and then after having rests in between I did manage to hoover, although I was completely knackered after doing it, I was very proud and happy with myself that I had managed all those things.
Sometimes the tiredness, headaches and muscle pain after doing something can be instant and at other times it can be a few days after the event, there is just no controlling at the minute when it will come, but the important thing is I know it will come and when it does I know now that instead of trying to be a hero and plodding on I must listen to my body and rest.
OMG..........I even cooked tea!!!! I made sweet and sour chicken, it doesn't take too long to make and it was tasty!
So today I'm feeling the tiredness kick in.................I think if this CFS stays in my body much longer I'm going to have to charge it rent, then again its such a bad tenant it should leave but I think it has claim squatters rights! I will evict it one day though.
I'll be at the docs tomorrow morning too, for some more bloods..........yeh! I hate it, I never used to be so wimpy on blood but for some reason when I have it taken now I have to look away as I feel faint else.
I will also be going into work for a chat about things, I'm not worried though, I'll just be honest with them as I always am, and they have been fab, I know sometimes you can grumble about work etc...........but I must say I am happy with my work and how they have reacted to my illness and that has helped me too, and I will recover because I'm just so determined too, and I want to get back to work, as sitting at home each day is really not good for you in so many ways.
I may even start to look forward to the weekend, our neighbours have a U festival each year (as it come before V) Clever! And they have invited us over, so if I'm ok on the day I may pop over for a little bit and if i start to be unwell its only 2 seconds back home..................I just hope we have some nice weather!
Well see you all tomorrow...............I'll let you know how I get on at the docs and work............
Todays picture was taken in 2007 in Li Li Chinese Resturant in Cuba...............I always find a chinese somewhere!
Have fun
Ginge x
Hello All...........
Well I woke up yesterday morning and thought "To Hell with it" If CFS is going to make me tired and some days miserable and unwell I may as well do something that I enjoy, and if that means I have to spend a few days in bed to recover then so be it................and wouldn't it be better if the specialist saw me at my worse?!?!?
It is great having this attitude then you do the activity, and then when you are paying for it being unwell in bed you think....."Damn I shouldn't have been so silly" Grrrrrrrrr I hate the way this make you feel regardless of what you do!
Anyhow I went fishing yesterday, only about 5 steps of walking from the car to my chair was needed! I didn't feel too good for the 1st few hours then the sun started to shine and I perked up a little, then the fish came.............oh yes I ended up with a bagful, and very very very very achy arms!..... I caught 20+ fish and some nice carp, not massive the biggest was about 3lbs but I so enjoyed it!
So today came..............and my appointment at the hospital, we decided to leave at 9.15am my appointment was at 11am.......I know it was only a 20-25 minute journey to Stoke but never knowing what Monday morning traffic is like I would rather be early than late and then miss my precious appointment............Good decision was made as the hospital is huge!!!! And in all different parts after getting lost and driving in circles for a hour we finally found the place and I arrived at ten to 11! Phew........I had started to panic! They do not provide the best directions in the world!
So I saw a lady specialist not Dr.Ellis but all the same I didn't mind, she was very good and very professional and very thorough.
She sat and listened whilst I explained everything from the beginning and wrote everything down, she then went on to do some basic examinations, by testing my reflexes, looking into my eyes for a longish period, and she touched my feet! Now I hate anyone and I mean anyone touching my feet and she had hold of them for ages, this was the only time during my appointment I could have cried! I know she had to do it but for that long?!?!? OH MY GOD!!! I could have kicked her! But restrained myself!! She had better think again before doing that!
So after the chat and the feet touching she said she wanted a copy of my MRI scan not just the report, she wants to do some more blood tests (not sure if I have any left!) they couldn't be done today as I need to fast so these will now happen on Thursday at my GP, and also a lumbar puncture, which I will await an appointment for...(not looking forward to that) To diagnose ME/CFS then you must rule everything else out as there is not a test to say yes you have CFS, however I will undertake any test as it is process of elimination and peace of mind as some days when I am feeling really bad you do think the worst!
The Neurologist (as I cannot remember her name sorry!) will also once these tests are done is requesting I go to physio to do "Grading", she said this was about gradually building myself up to being able to do more, so I am looking forward to that and like I said I will do anything! If you don't help yourself no-one can help you I believe.
Ohhhhhh and also today whilst I was out I went to see me best bud! I love going to my Chumley's for a chat and beverage...........I am going to try and visit her every week now, as sometimes even before I was ill I was such a crap visitor of friends but they are important especially true friends and that's what she and her family are, we have such good times together..............today's pic is me and my chumley!!! Luv ya loads!
So two very very long days have been had, and needless to say as I write this my eyes are very heavy and I am sleepy, but I will try and hang on until at least 8-9 o'clock tonight so I can then sleep through and hopefully feel a little better, although I am so so happy at the minute, because the specialist believed me and didn't palm me off and is taking some positive steps with me and I go out and about a little
Well here's to looking forward guy's
Love ya..........Ginge xxx
Hello................How is everyone?
I'm not too bad today, I have had a very relaxed day, I'm feeling tired and I still have the pain in my head, but I feel happier in myself today, not sure why, not that I need an excuse.........
So have we all been up to much today? Shopping....out with the family...........or my favourite........in the pub on the lash?
Well I have been disappointed in the cricket today, glad the rain came, I saw a sign in the crowd saying "Cowards pray for rain" I am an Proud English Women an I'm sure not a coward, but if the rain comes and washes out the final day I'll take it!!
Had a few winners on the horses too today, the best being a 16/1 shout, now maybe that's why I'm happy :-)
I have even made tea tonight, okay so it was chicken burgers, but its a start and on Thursday for tea I made one of my favourites Chicken Chasseur with mushrooms, peas and roast potatoes..........it was soooooo very tasty!
Apart from that I have just been relaxing on my bed, and trying to make a decision on whether or not to go fishing tomorrow, I may do as Ferg is going to a lovely little fishery at Seighford and if it get too much its not far too come home or I can always have a cat nap in the car as you can park right next to where you fish............so like always I'll see what I'm like in the morning, I think I could do with some fresh air to be honest and try and keep myself occupied before the appointment on Monday.........
Well its just a short post tonight.................I hope if any of you are out drinking tonight you have a fab time, and you don't suffer too much with a hangover tomorrow!
I'm going to make myself some popcorn and see what films are on..........although I sometime wonder why I pay for 300 million (exaggeration I know) channels as sometimes I just cannot either choose what to watch or there is nothing on!! I know its a hard life!
I'll update you on the fishing decision tomorrow or Monday
Todays Picture was taken in Senor Frogs in Mexico October 2008.............I was sampling a shot called......."Red Headed Slut" So unlike me ;-)
See you soon xx
Well the weekend is nearly upon us and I wonder what I'll be doing..........although I not planning on anything this weekend, I heard the weather is going to be bad anyhow.
As it's my big day on Monday with the specialist I think the best thing I can do is rest up, I would love the DR to see me at my worst but I have to travel to Stoke and the you know what its like waiting for your appointment, how many patients are actually seen on time??? So I'd rather rest and save my energy for Monday so I can try an have a clearer conversation with the DR.
Oh my........ the days can sometimes seem so long and boring...........I love being on facebook though as I'm lucky there is usually someone to chat to on there, even if it just 2 mins to say hello, it makes my day seem better, as you can imagine 8-9 hours a day with just yourself for company isn't much fun and for someone just to spend 2 minutes of their time to say hi is such a boost for me, I've never experienced loneliness before and I think this is the one thing I find hard to deal with..............
So today I am not up to alot, I have put a load in the washing machine then washed and dressed, and even cooked myself some boiled eggs for breakfast............not a lot you may think but for me it is.............I am so very tired now though and will probably have to give in to sleep at some point this afternoon, my head is still pounding and I feel quite cold so I have got a hot water bottle (yes in July!) Although I will try and write the shopping list for Ferg, he doesn't really need one, he is a very good food shopper......and actually before i was ill he loved to do the shopping and we would always fight over the trolley, not sure why that just us I guess, with me usually losing that fight, I have tried to go Tesco whilst I have been ill but after 10 mins its all too much for me and my legs become very heavy and my head starts to spin with tiredness so I have made premature returns to the car, one day soon though I will do a full shopping trip, even if that means having some kind of aid to help me.
The tiredness I get is not like the "normal" tiredness you may experience where you can feel it gradually coming upon you, I can be fine one minute then as if I have a switch and bang it comes on like I have been injected with anesthetic if any of you have experienced that.
Well I hope you all have a fantastic weekend with whatever you are doing.................I will be praying for no rain so I can continue to watch the cricket, but I will probably participate in a few bet on the old nags too.............fingers crossed for some winnings.................
Todays picture is from a night out with me muckers..............!
Catch you all over the weekend....................Ginge xxx
Arggggggggggggghhhhhhhhhhhhh.........There got that off my chest...........sometimes I just have to........
My head the last few days has just been spinning and spinning........I think the headaches are the worst symptoms for me, or at least they have been just lately, and no painkiller helps at all..............At first the headaches scared me, absolutely terrified me if I'm honest..........I kept thinking when they first started 6 months ago it has to be a tumour or something serious, thankfully I had an MRI scan within 2 weeks of seeing the doctor again in February and luckily enough that scan proved clear.............it even showed that I had a brain for all you doubters out there!
I can only explain the headaches as having my head put in a vice and someone is tightening it all the time, the time length of the headaches vary, sometimes I have a headache free day, now these feel strange and also leads me to believe that I am better only for another symptoms to then take its place...........
The headaches may come and go throughout the day lasting anything from a few minutes to a few hours, and at the minute I cannot find anything to help me, but I'm sure as I progress and learn more and speak to other sufferers I hope to find something that helps me.
I managed to wash up yesterday...... and change the bed sheets............and I was quite tired after it, to be honest I was tired before it but I always try and aim to do at least one thing in a day just so I move my body around and avoid bed sores........I then ate my tea, a weight watchers chicken curry not that I am watching my weight, god I have enough of CFS being on my plate without worrying about a diet, although I do try my best to maintain a balanced diet, and have my 5 a day, which is mainly a fruit salad Ferg makes me, I just like the curry anyway. I then had a relaxing bath before settling back into bed.
I did suffer with stomach ache last night, not sure if this will become a regular symptoms as I haven't had it before, maybe it was the curry, I don't know I will monitor that though.
I also had a nice chat with my boss at work yesterday, although work is not on my mind much at the minute I do hope to return as I not only love my job, I love going into the office and talking with different people of any sex and age each day, and I bet the office is just too damn quiet although I bet work rates will be higher without my distracting habits! I just love to chit chat, but I miss the banter, especially about football, horse racing well lets be honest I'd talk about paint drying, anything just to chit chat!!!
I still believe I am in the acceptance stage of this and still hope that my a click of a finger I will get better, but deep down I know it will take time, this is where I really wish I was more of a patient person, another thing I will have to learn to be.
Anyhow that's all for today as the Ashes is hotting up...........Keep smiling because even under this dark cloud I am..:-)
See you tomorrow Kev.............P.S Anyone seen Perry!!! LOL
Well where do I start today.........this seemed so easy the 1st two day........but me be stuck for words........there is always a first....Do I tell you what I did yesterday? Or just my thought and feelings? I'm not too sure so you will probably just get a mixture of anything and everything......
Well I'm on the countdown to my 1st appointment with the specialist Dr.Ellis......at Stoke hospital. I'm not sure what to expect, I am not naive enough to believe that he is going to offer me a miracle cure just hoping for him to say "Yes I understand" and "This is how I can help"...and believe me I am willing to try anything...(well within reason lol)
I have started to prepare for this, as you know what its like when you go for an interview or similar you always forget something so I am writing down my symptoms, I tried to do frequency but you'd need a bloody master degree to work that one out! Also Ferg ill be by my side so I'm sure he will help me and also help absorb the info I hope to get.
Well yesterday I managed to go to my mums for a short while, a change of scenery sometimes helps, as most days my change of scenery is my bedroom to the front room and vice verse! Although needless to say I was completely shattered by the time I got back, but as it was 6pm I knew that if I slept then I wouldn't get much through the night so I fought it hard, I know I shouldn't but sometimes I am left in this catch 22 situation, sleep in the day...dont sleep at night......I could sleep for a full day and still wake up unrefreshed, so I try and maintain some sort of routine by going to sleep at between 10-11pm and waking between 7.30-8am which is similar to when I was working so I want to try when possible to keep that as I think its important. Some day's though I do sleep, Monday I slept almost 3 hours in the afternoon..........woke up and felt like poop so slept again.........you may think yeah that would be nice but I'd rather be rushed of my feet at work and feeling a little stressed there than being asleep.
I keep looking on the Internet.....thinking maybe I'll find a cure but that's just hope rather than being a realist but it beats watching the crap on TV all day........although I do watch Jeremy Kyle because no matter how crap I'm feeling that show makes me feel a whole lot better! :-)
Well at least the Ashes has started now, as boring as some of you may think cricket is, it has turned into one of my favourite sports now, I was even looking forward to going to Edgebaston in Birmingham in August for the T20 finals day, but sadly I have now sold my tickets as I just cannot be sure what I will be like on the day...........but I'll have a great view from my bed or the sofa...........and I know one day I will go and see a live game........I just wont plan for that day yet.
It will be the same when the football season comes along, as you know Liverpool FC is a great love of mine although they probably put me through more pain than CFS....lol, I dont get many tickets but we aim to go a few times a season, when that will next happen I do not know, but again I will watch on from afar......................
So I am really struggling at the minute to write anything else I think the tiredness is clouding my head slightly so I will sign off and I want this to be a daily blog not a Catherine Cookson epic............but I do like to harp on!
Thanks again for reading and I hope you continue to do so..............but I must now change my bed sheets.........that has to be one of the best things in the world....fresh bed linen.........wish I had it everyday.........although there is nothing to stop me really..........hmmmm I may ponder that, although I think Ferg may think I've gone more nuts and OCD than I am already...............
Take care see you tomorrow!!! Gingexx
Well thanks for the response to my 1st post, I am overwhelmed by all your kind words and support.
I suppose that means I will now have to carry on writing now!! Thanks!
I am also sorry if I made you cry, obviously that was not my intention, I just want to raise awareness of an illness that passes so many of us by, I mean I have it and still do not fully understand it but in time I will.
I don't want this blog to be about preaching, more so just how I am going to manage this. I have had some challenges in my life, like the two years I spent in the army being one of the biggest but then along came this.........and I just wanted to share it with others, if I help other sufferers and help non-sufferers understand than that will be great.
I have joined an online forum which I found about 6-7 weeks ago and that has been fantastic, I have learnt so much from the people on there, they are so friendly and share the pain and suffering, it may sound strange to some people but knowing someone else is going through the same as yourself can be comforting too, as you don't feel alone and you know its "not all in your head".
In particular I have been chatting to someone and after only a couple of weeks I now regard as a friend...or I will say my " We will go camping together before we are 50" Friend......Now she will know who she is...!
I have always took for granted that I have my family and living so close to me and they will always be there, but no longer do I take this for granted and I know I am lucky. In fact I probably always took everything in my life for granted, going the pub, going on holiday, going to the shops and being quite spontaneous in my life. I raced through it at 110 mph without thinking about consequence, I always wanted to be centre of attention, playing the clown because I thought that was important, always trying to please others and giving people what the had come to expect from me. Maybe sometimes I was too much for people.......that's just me though.................I am not saying I regret all the things that I have done.............I actually loved it all, yes I made mistakes and hopefully I have learnt from them and if not I'm sure I will at some point.............A mistake is not a mistake if you don't learn from it. It just means that I now appreciate the time I go out more, being able to do "normal everyday things" instead of assuming I will and can do it.
On Sunday I went fishing for a few hours.........a hobby that my hubby is keen on and I started to participate in last year, even though my arms sometime hurt a lot that's I cannot fish, I just sit there in the open and enjoy the hours outside........Obviously wearing suncream at factor 50000 as I don't want sun burn on top of CFS too! I just find it so relaxing just sitting there watching the world go by and enjoying the fact that the passes by speak to you and not knowing that your ill............I can explain how great this feels........... :-)
I always thought about writing a diary but have never bothered too, but just in the last two days writing this has made me feel good about myself again and your words on encouragement will keep me going..................so thanks again..... ;-)
Hello all and welcome to my blog....................
So why have I started a blog?.........
Well I feel I have lots of stuff to get off my chest and the best way possibly is to document it and share with anyone that may be interested.
This blog is about my day to day life on how I am coping with an invisible illness know as Chronic Fatigue Syndrome/M.E or I will now refer to this as CFS. I will whilst I am blogging tell you the symptoms as I tell my story instead of writing one big long boring list. (even though those who know me best know how I like to go on!)
So where did it all begin...........I remember it well, Xmas week 23rd December 2008, I was at work (I work as a call centre team leader for the Central Planning Department) and I was all excited I was finishing for two weeks the following day, the first time in a long time I was going to have both Xmas and New Year off...............all my presents had been bought and wrapped and was planning to party........well its one of the better things I do.
However that day at work I began to feel unwell, I think I had felt slight;y under the weather for a few days on all honesty but just thought it was a bug that would soon pass, but that day at work I was really unwell and I wanted to stay at work that day as I tried to tie up the loose ends before my leave. I was soon found in the toilets feeling really unwell, my legs were like jelly and I was feeling very flu like, I had pains everywhere in my body, my head pounding and I was so hot I felt like I was sitting on the sun. Needless to say I went home that day and straight to bed, thinking a good nights rest and I would be right the following day........only I wasn't.
I had headaches of the worst kind, like my head was in a vice and someone was tightening it, I was very feverish and felt like I couldn't stand up.
Okay 48 hr bug...............nope Xmas Day came and I was so unwell that I managed to dress and take myself to my mums after missing the breakfast at my father-in-laws.........the plan was I was having dinner at my Dad's for the 1st time in about 7 years...........I got to my mums managed to open a few presents see some family then I had to head for bed...............I had never felt so unwell.......I missed all of Xmas day............No dinner, No alcohol (No I knew then I was ill)
So Boxing Day came and I remember this day as my hubby was so worried as I was he called 999, an ambulance crew came did various tests said it was the flu and to rest............so off hubby went to the chemists and got every medicine known to try and make me feel better.
Okay so take plenty of fluids, paracetamol, and rest and I'll be fine for New Year............ermmmmmmm think again..........So New Year came and went the festive season passed me by in a daze of flu/cold remedies and I was due back at work on the 5th January 2009.........but did I feel better no I didn't I was still suffering like I had been for the previous two weeks, so I decided enough was enough and I managed to get out of bed and make it to my doctors surgery where I was told i had a viral infection and again to rest......by this stage I was sleeping more than I was awake, even small things like making a cup of tea completely wore me out.
I was getting more and more frustrated by the day, I hadn't been out in almost a month...and this does not mean drinking but even going to the shops was too much for me, and this was my first encounter with what people believe cannot happen to me I started to cry, and cry and cry.
Again I returned to the doctors as I had now begun to see itchy hives appear on me, and I began to think, I holidayed in Mexico during October 2008 and thought maybe I had some jungle fever!! After all I had been bitten over 40 times whilst there, so I was tested for malaria, glandular fever and various other things and all test came back negative so the doctor was again resorting to the fact it was a very bad viral infection , but the headaches i was getting were really starting to worry me now, I kept think is something seriously wrong in there so I discussed this further with the doctor who sent me for a MRI scan and again that came back clear................
Yes so what seems like hundreds of tests all negative.....Great.............or not so great! I was still ill, was it all just in my head?!?!? No I wouldn't accept that...........but I didn't have the strength at this time to fight, even having a shower each day or a bath took all my energy, I felt like I was a faulty rechargeable battery that would rest for days, become fully charged then after 5 mins be flat again........I knew this wasn't me and no matter how much I tried I just couldn't "Shake this off"
So we get to the end of February and I still had not returned to work, I had been off sick for 10 weeks and was now visiting the doctor almost twice a week It was also my Nan's 80th birthday and we were having a get together at the pub, how I managed to go I do not know but I survived about 3 hours and two pints of shandy, at 10.30pm I'd had enough and had to go home, but I thought I was on the road to recovery as I had lasted 3 hours!! Whoop!
I even returned to work and they have been completely understanding which I am extremely grateful for, the company and more so my bosses and colleagues have been quite kind and considerate though this that after some discussion I was to work part time initially then gradually work my way back to full-time...I finally started to feel normal again mixing with people. You may think "Yeah 10 week off work" I can tell you when you feel like I do its no joke, you feel isolated from the world outside, you start to think that people forget you, you think that they think you are just putting it on, that's probably why I try so hard all the time to be my old self as I don't think some fiends and family can deal with the sick Laura.
I was so very tired even after working 3 hours a day but just thought this is part of my recovery and it will take my body time to adjust, so week on week I started to increase my hours but still felt rotten how I managed to get through the next 7-8 weeks at work is beyond me but I just felt like I had to do it, to be normal, I was having to sleep and rest all weekend just to get ready for Monday again, but by Wednesday's I would be completely drained, I managed to get up to just over 30 hours a week and then one day after about 7 weeks, even though I knew I had been badly struggling for about a week but saying nothing as I just didn't want people to think bad of me I just lost it........I rang my boss in floods of tears saying I just couldn't do it and went home........this was on the 28th April and I have been at home ever since!
I went straight back to the doctors and saw and new doctor..........who will remain nameless but I left the surgery feeling worse than ever...........as all my bloods were clear she said I was depressed, which I can see why now, I mean I nearly flooded the surgery that day...........where had all these tears come from??? Maybe they were the ones I (the heartless bitch) had saved for many a year, she wanted to put me on anti depressant which I flatly refused............."I AM NOT DEPRESSED I'M ILL" I kept saying, yes I was crying and probably felt down but understand this I had been ill for 5 months and all that was being diagnosed was a bloody VIRAL infection!!! I now dislike that word very much!!
So sobbing uncontrollably into my rock of a husband who I will say now I love very much and if it wasn't for him first and foremost I probably would be in a padded cell, as he believes me and witnesses each day how I struggle behind closed doors, how the "Hard Shell" is actually cracked and falling apart, I just didn't know where to turn.
I went back to the doctors the following day and say the GP who I will only go to now, he sat and listened again through my tears about how the last 5 months had been for me, that there was no way in this world I was depressed, and we discussed at length everything, and he said he wanted to do some more blood and that I was to see him in a week, so more blood was done all cam back clear and that was when he said the words, I don't think you are depressed......(music to my ears) and it was possible it was CFS.............hmmmmmmmm at last not that BLOODY VIRAL INFECTION!!! That I had heard for the previous 5 months. He was very honest and said he didn't know to much about it and that he would read up on it himself and he would refer me to a specialist who is interested in this area.....(Appointment is on 13 th July....!)
So a diagnosis.........what does this mean...........well after surfing the Internet daily and buying books on the subject I have learnt so much about an illness not many people are aware or if they are they do not have a full understanding of.
Its not just tiredness.............although for me that is the major factor and I know I said I would do a list but I am because its easy that way, these are just some of my symptoms..............Extreme Fatigue, Headaches, Swollen Lymph Nodes, Muscle Aches, Jelly Legs, Nausea, Insomnia, Mood Swings, Unrefreshed Sleep (even after 12 hours or more or less) Sore Throat and Ear Pain.
Some days I can go out although walking for more than 20 minutes is a very hard, I can cook, I can clean the flat, and even go fishing for a few hours..............Some days sadly I cannot get out of bed , and getting drinks or food is so very hard. Each day is very unpredictable and I must start to learn how to manage this but the last 6 months have been such a whirlwind I am finding it hard to absorb info too.
I can no longer plan for future events, but take things daily "Depending on how I feel", I find myself becoming jealous of family and friends going out enjoying themselves because I would usually be the first there drinking and dancing stupidly, I try and make jokes about being ill as I feel that what some people expect of me but it hurts but I would never show it as I have said before only those really close to me know me for who I really am, I'm not the "tough nut" I try to be I hurt and feel pain and get sad just like everyone else.
So that brings me to this blog...........and God have I cried just writing the above............my laptop is swimming...............I just think this could be an outlet for all those feelings I bottle up.............I just now feel the need to let them out...........without having to go on a course of anti-depressants.
I am not ashamed to say I am ill, I am no longer ashamed to say I cannot do things that I used to do, its hard to accept this but I am going to have to, just like my family and friends will have to accept that for the moment I may be sad, I may be happy, I may be moody, but at the end of the day I am still Laura............just a little different on some days!!!!!!!!! (as I was before teee heeee)
If you ring me or text me and I do not answer or you offer to visit and I say not today please do not take offence it just means I am having a bad day, on my good days I promise to share the old me with you.................if I feel I can manage it.............Just dont expect too much....................
So here goes this is the first chapter in my blog!!!!! Whoopppppppppppppp
I aim to bog each day or in the least 4 times week so please feel free to read and visit this when you want.........................
I just want to say thanks to Ferg............I love you so much and I am very proud to call you my husband and I would be lost without you, you are "My Lobster"
To my family, Thanks for your support I love you all...............
And to my friends...........Thanks for your support and being there. I ove you all too...................................
Happy Reading everyone!!!
Jeezzzzzzzzzzzzz I must sleep now!!! Be back in a day or so......................!!! :-)
