So its Christmas Eve, the big day is only hours away. I wanted to take this opportunity to reflect on the last year; which has been both the best and worst year to date.
I am so grateful that I was well on our wedding day and was able to walk down the aisle. My family made me so proud that day; happiest of my life - it was a truly amazing day and I got to marry the man of my dreams. A huge thank you to everyone that helped make our day so fab. We also had a fabulous pre wedding honeymoon to Egypt and met some lovely friends and also had a fantastic honeymoon in London following the wedding.
On the flip side I have had quite a poorly year; even before coming off my medication I was struggling a lot of the time but since coming off my medication I have had terrible flare ups and my fits have reoccurred. I am hoping the New Year will resolve a lot of these issues and fingers crossed for our family wish to come true; as this in itself has been such a difficult stage to get to. You are definitely not told about all of this when you do sex education or biology at school where it is made out to sound you only have to look at one another and there'll be a baby. If only it was that easy!
So to everyone Merry Christmas and Best Wishes for 2012. Thank you to everyone that has taken time to read my blog since I started it; I hope you have enjoyed/found informative what you have read. I will be continuing this throughout 2012 so you can follow me on what I hope will be an exciting journey.
Special shout to http://operationuptheduff.blogspot.com I hope the New Year brings you your 1st child and lots of good health.
So enjoy the season guys, stay safe and spare a moment to think of those which cant be with you as well as those which are not fortunate enough to have any family around them this Christmas.
Saturday 24 December 2011
Wednesday 21 December 2011
Semi Successful
So a semi successful Dr's trip today, after getting through at 8:10AM (10 minutes after opening) my Dr I wanted to see was sold out; oops! sorry, fully booked. So I went to see the lovely Dr A and got some antibiotics at long last to hopefully clear aware my tight chest and cold which I have been fighting the last 15 weeks. Whilst this Dr has a fabulous bed side manner I don't always have the most confidence in him so couldn't discuss with him something he had mentioned last time I saw him which concerned me regarding my ALT levels. Something to do with my liver! A level of 479 and from what I have been able to see online is very high. I think at that previous appointment he was referring me but it wasn't clear. I will have to go back in 4 weeks anyway for another fit note to cover time away from work until I have seen the Neurologist. Little things like thinking 4 weeks from now will take us up to 30th Jan are the times the confidence falters. Maybe then I will get an appointment with the other Dr so that I can discuss this.
Its been nice having Hubby home today; although I wish I hadn't made him ill - but the company has been nice and the day has passed much quicker.
On a bright note and hoping to feel a little bit better and hoping all my family are well for it, Christmas is now only 4 more sleeps. Looking forward to spending time with the ones I love but also remembering all the people who cant be with us, love you and think about you all the time Nannie Duck, Grandad Bunny, Nana Joan and Grandad Jimmy xxx
Its been nice having Hubby home today; although I wish I hadn't made him ill - but the company has been nice and the day has passed much quicker.
On a bright note and hoping to feel a little bit better and hoping all my family are well for it, Christmas is now only 4 more sleeps. Looking forward to spending time with the ones I love but also remembering all the people who cant be with us, love you and think about you all the time Nannie Duck, Grandad Bunny, Nana Joan and Grandad Jimmy xxx
Monday 19 December 2011
Practise for when we have a baby
So grateful that I was able to sleep through last night; I really needed it. I suppose its getting practise in for when we have a baby. Friday night I only got about 2 hours as the pain was so immense I could not get comfortable and every time I moved it hurt. Then Saturday my cold decides to come out again, only a few hours sleep again and I managed to get through a whole toilet roll trying to keep my nose excretment off the bed covers. By doing this I woke up yesterday morning looking like Rudolph and to go with the red nose, red, sore crusty lips! Attractive. I was dreading another night of clock watching whilst contending with the pain, the cold and my tight chest and cough! But all in all it wasn't bad, I slept through. The pain however does have a habit of taking over my dreams. I have lots of pain dreams; they vary, some being not very nice dreams and some being so bad I wake up in tears. The problem with the pain dreams whichever the degree is that they are so vivid and feel so real.
So I cant really talk about these dreams without giving you an example so I will use last nights as they were some of the milder. I went to a 'work camp' and it was run by Apes; everyone literally had to fight to survive until the Apes were satisfied. I somehow got hold of a champagne glass and broke it so I only had the stem and used this as a weapon. When all of this was over they then confirmed that all the survivors were pregnant (if females) or expectant fathers (if males) but I was pregnant with a Dog! Yes, a dog!
They're weird and sometimes quite scary although the worst dreams have to be where people close to me die or leave me. On occasions I even wake up feeling guilty as I have cheated on my hubby in my dream. I found this a really tough subject to approach with him as I cant lie even about something which hasn't really happened and the feeling of guilt was too much to bear. He has told me not to be silly they are only dreams but it is how vivid they are and when I am dreaming I cant determine that its not reality.
Pain is a strange thing, it can do lots of different things to you. Not helped at the moment by the fact I am in front of the TV all day currently. You couldn't guess I watched 4 of the planet of the Ape films last week? I used to blame the crazy dreams on the cocktail of medication I was on; it wasn't until I came off these in August that I even linked the dreams to the pain.
So I cant really talk about these dreams without giving you an example so I will use last nights as they were some of the milder. I went to a 'work camp' and it was run by Apes; everyone literally had to fight to survive until the Apes were satisfied. I somehow got hold of a champagne glass and broke it so I only had the stem and used this as a weapon. When all of this was over they then confirmed that all the survivors were pregnant (if females) or expectant fathers (if males) but I was pregnant with a Dog! Yes, a dog!
They're weird and sometimes quite scary although the worst dreams have to be where people close to me die or leave me. On occasions I even wake up feeling guilty as I have cheated on my hubby in my dream. I found this a really tough subject to approach with him as I cant lie even about something which hasn't really happened and the feeling of guilt was too much to bear. He has told me not to be silly they are only dreams but it is how vivid they are and when I am dreaming I cant determine that its not reality.
Pain is a strange thing, it can do lots of different things to you. Not helped at the moment by the fact I am in front of the TV all day currently. You couldn't guess I watched 4 of the planet of the Ape films last week? I used to blame the crazy dreams on the cocktail of medication I was on; it wasn't until I came off these in August that I even linked the dreams to the pain.
Wednesday 14 December 2011
In that minute I felt like ME!
It was really nice to get out last night and see the lovely ladies I work with but I have to admit I was quite nervous about how people were going to handle it. I tucked myself on the corner of the table and was able to hide my fits under the table. Whilst I had numerous ones they were all rather mild and just in my leg so relatively easy to hide.
I felt a bit awkward to begin with and as though some people felt uncomfortable to make eye contact with me, but things soon relaxed and festivities begun. Secret Santa was amusing however not much of a secret when nearly everyone knew who got their Secret Santa (isn't it always the way?) My pressie from Santa was brilliant, a phone holder which will help stop my phones vibrating on the desk getting on the teams nerves and mini hot water bottle hand warmers, absolutely fab for my cold and painful hands. I was pleased that the secret Santa I got was taken in the way it was meant (as a joke) and it got a good laugh. In that minute I felt like ME! However the reality came crashing down knowing that I wouldn't see most the girls again until February when I can hopefully return to work once seeing the neurologist.
I got home and was in bed by about 9.30 and it has taken me all day to get over my few hours out. I feel absolutely exhausted and extremely achy which hasn't helped the fits. Luckily I have slept a lot of the day away so I'm hoping I will be able to sleep tonight too.
What to do for the rest of the week? I might just make an effort to get dressed and not spend the whole day in my PJ's; other than that I cant see my week getting much more exciting and will probably resort to a DVD marathon. On the bright side Christmas is just around the corner which means I will have some company from the evening of the 23rd to lunch time on January 3rd. So this year I really am looking forward to Christmas. A few weeks ago I wasn't but after being stuck at home day in day out again and an inevitable time at home until my neurologist appointment Christmas has become far more appealing!
I felt a bit awkward to begin with and as though some people felt uncomfortable to make eye contact with me, but things soon relaxed and festivities begun. Secret Santa was amusing however not much of a secret when nearly everyone knew who got their Secret Santa (isn't it always the way?) My pressie from Santa was brilliant, a phone holder which will help stop my phones vibrating on the desk getting on the teams nerves and mini hot water bottle hand warmers, absolutely fab for my cold and painful hands. I was pleased that the secret Santa I got was taken in the way it was meant (as a joke) and it got a good laugh. In that minute I felt like ME! However the reality came crashing down knowing that I wouldn't see most the girls again until February when I can hopefully return to work once seeing the neurologist.
I got home and was in bed by about 9.30 and it has taken me all day to get over my few hours out. I feel absolutely exhausted and extremely achy which hasn't helped the fits. Luckily I have slept a lot of the day away so I'm hoping I will be able to sleep tonight too.
What to do for the rest of the week? I might just make an effort to get dressed and not spend the whole day in my PJ's; other than that I cant see my week getting much more exciting and will probably resort to a DVD marathon. On the bright side Christmas is just around the corner which means I will have some company from the evening of the 23rd to lunch time on January 3rd. So this year I really am looking forward to Christmas. A few weeks ago I wasn't but after being stuck at home day in day out again and an inevitable time at home until my neurologist appointment Christmas has become far more appealing!
Saturday 10 December 2011
Porridge diet????
MMMMmmmmm, Porridge! Think I tried it as a kid but couldn't stand it but tried it this morning and its actually really nice and really filling, I haven't felt hungry all day.
OK so today wasn't too bad at all. My 4 1/2 year old nephew had been told what to expect and the other two are completely oblivious to it anyway. Most of the fits thankfully weren't seen but when on an iggle piggle ride the 4 1/2 year old saw my fit and look quite horrified but quite quickly composed himself. So his reaction wasn't either of the two suggestions he came up with it when he was told. Option 1 - Laugh at Auntie C when she shakes (his mum said this might not be very nice), Option 2 - Shake with Auntie C to make her feel better. Obviously the shock took over but it was a nice feeling once he had composed himself and came to hold my hand. Love them. So all the kids and the dog enjoyed the trip to the seaside; it was cold but so nice to get out the house and alleviate some pressure off hubby who seems to just constantly worry about me and look after me. Instead he got to enjoy some time with his nephews whilst knowing I was OK.
We got back and it was very cute watching the oldest of the 3 nephews helping his Uncle bath the dog, but it was quite amusing when he wandered off as it got boring and left hubby all by himself trying to fight to keep the dog in the bath as well as shampoo and rinse him. Next it was my turn, I had promised to make some biscuits with them - hmmm! more challenging than I anticipated, two 2 year olds, a 4 1/2 year old, an oven and saucepan of stuff heating. Maybe its just because I'm quite exhausted; after all first thing this morning I was struggling to even write an email due to the pain in my fingers. Even as I type now I am trying not to 'Ouch, ouch, ouch!' every time I key a letter.
One lot out and one lot in, a visit for mum and dad who had put a lovely Christmas hamper together for us. Don't know what I'd do without them; they do so much for me and always have, I hope that I will be able to do the same for my kids. Along with the hamper they brought the Christmas decs so hubby was happy as he has been bugging me since 1st December to put them up. I don't get all that excited about Christmas; its just another day. The day itself is lovely and I love seeing people open their pressies but the build up is what I can't stand. Hubby on the other hand is a big child and has also been bugging me to see Arthur Christmas so I took him last night; it wasn't actually as bad as I imagined and it had quite a good story but I wouldn't say overly child friendly.
So before decking out the flat it needed a bit of a blitz, so absolutely exhausted now. Tree is up and looks really pretty but I am looking forward to doing nothing else tonight and very little tomorrow.
So pizza and X factor final it is and I am guessing after a day like today I will sleep like a baby, well I hope so anyway. (That's a baby which sleeps through, not one which wakes every 5 mins)
OK so today wasn't too bad at all. My 4 1/2 year old nephew had been told what to expect and the other two are completely oblivious to it anyway. Most of the fits thankfully weren't seen but when on an iggle piggle ride the 4 1/2 year old saw my fit and look quite horrified but quite quickly composed himself. So his reaction wasn't either of the two suggestions he came up with it when he was told. Option 1 - Laugh at Auntie C when she shakes (his mum said this might not be very nice), Option 2 - Shake with Auntie C to make her feel better. Obviously the shock took over but it was a nice feeling once he had composed himself and came to hold my hand. Love them. So all the kids and the dog enjoyed the trip to the seaside; it was cold but so nice to get out the house and alleviate some pressure off hubby who seems to just constantly worry about me and look after me. Instead he got to enjoy some time with his nephews whilst knowing I was OK.
We got back and it was very cute watching the oldest of the 3 nephews helping his Uncle bath the dog, but it was quite amusing when he wandered off as it got boring and left hubby all by himself trying to fight to keep the dog in the bath as well as shampoo and rinse him. Next it was my turn, I had promised to make some biscuits with them - hmmm! more challenging than I anticipated, two 2 year olds, a 4 1/2 year old, an oven and saucepan of stuff heating. Maybe its just because I'm quite exhausted; after all first thing this morning I was struggling to even write an email due to the pain in my fingers. Even as I type now I am trying not to 'Ouch, ouch, ouch!' every time I key a letter.
One lot out and one lot in, a visit for mum and dad who had put a lovely Christmas hamper together for us. Don't know what I'd do without them; they do so much for me and always have, I hope that I will be able to do the same for my kids. Along with the hamper they brought the Christmas decs so hubby was happy as he has been bugging me since 1st December to put them up. I don't get all that excited about Christmas; its just another day. The day itself is lovely and I love seeing people open their pressies but the build up is what I can't stand. Hubby on the other hand is a big child and has also been bugging me to see Arthur Christmas so I took him last night; it wasn't actually as bad as I imagined and it had quite a good story but I wouldn't say overly child friendly.
So before decking out the flat it needed a bit of a blitz, so absolutely exhausted now. Tree is up and looks really pretty but I am looking forward to doing nothing else tonight and very little tomorrow.
So pizza and X factor final it is and I am guessing after a day like today I will sleep like a baby, well I hope so anyway. (That's a baby which sleeps through, not one which wakes every 5 mins)
Friday 9 December 2011
A long wait ahead....
Neurologist appointment is through, 30th January. I am going to go insane if I have to stay off work that long!
I am taking it easy and staying safe - not having a bath or shower unless hubby is here to supervise me; I don't want to drown. Not leaving the house unsupervised in case I fit and collapse - as that would be embarrassing!
But I find I am better when I keep my mind active so just pottering around doing little bits around the house where I can stop and sit down if i feel a fit coming along.
The fits have taken my mind off the constant pain from the arthritis though so I am trying to think of some positives. This is a good thing as the pain has been rather intense over the last few days especially at night.
Looking forward to having company over the weekend. I am seeing my youngest 3 nephews but I am just hoping that if I fit it will not scare them. At 2 and 5 they don't always take too much notice but the last thing I want is for them to freak out so I am a little nervous about it.
I am taking it easy and staying safe - not having a bath or shower unless hubby is here to supervise me; I don't want to drown. Not leaving the house unsupervised in case I fit and collapse - as that would be embarrassing!
But I find I am better when I keep my mind active so just pottering around doing little bits around the house where I can stop and sit down if i feel a fit coming along.
The fits have taken my mind off the constant pain from the arthritis though so I am trying to think of some positives. This is a good thing as the pain has been rather intense over the last few days especially at night.
Looking forward to having company over the weekend. I am seeing my youngest 3 nephews but I am just hoping that if I fit it will not scare them. At 2 and 5 they don't always take too much notice but the last thing I want is for them to freak out so I am a little nervous about it.
Tuesday 6 December 2011
Is it ever going to just be simple?
I start dealing with one thing then something else decides to rear its ugly head. I found myself in A&E yesterday as the fits I got over 10 years ago have decided to make an appearance. Surely it has to be more than a coincidence that I had these before starting my arthritis medications and now that I have stopped them.
Of course this trip was as successful as my hospital stays years back; all tests coming back clear and no further forward! So after 4 and a half hours having tests I was allowed to go home. I was NOT impressed with the cannula he decided to put in my arm when taking bloods; and he would not take it out! I could feel it and it hurt on my already painful joints, argh!!! I thought as I am an adult when I told him to take it out he would but no such luck, 2 hours I had it in! They took it out when I was a child and couldn't deal with it.
So it was suggested I go back to my GP; as whatever it is, isn't life threatening (thank god)! However how do they know its not when they don't know what it is. You've got to laugh, they didn't even test for the infection which was found all those years back and said to be the possible cause.
They also asked me to speak to my rheumatologist of which isn't an easy task either. I did however and they think its highly unlikely to be connected to my arthritis.
So doctors again tomorrow let's hope it will get me somewhere. I need it sorted, I want to be able to drive! Not being able to would be like not being able to see or hear or talk. Far too devastating to articulate.
Again I am stuck at home as understandably I'm a health and safety risk at work. Trying to stay positive as I don't want to get too down as that won't help but its so hard, its like a constant battle!!
On a positive note results from blood test 1 are eventually back and got the result we were hoping for so just a waiting game for blood test 2 results.
Surely things can only get better.
Of course this trip was as successful as my hospital stays years back; all tests coming back clear and no further forward! So after 4 and a half hours having tests I was allowed to go home. I was NOT impressed with the cannula he decided to put in my arm when taking bloods; and he would not take it out! I could feel it and it hurt on my already painful joints, argh!!! I thought as I am an adult when I told him to take it out he would but no such luck, 2 hours I had it in! They took it out when I was a child and couldn't deal with it.
So it was suggested I go back to my GP; as whatever it is, isn't life threatening (thank god)! However how do they know its not when they don't know what it is. You've got to laugh, they didn't even test for the infection which was found all those years back and said to be the possible cause.
They also asked me to speak to my rheumatologist of which isn't an easy task either. I did however and they think its highly unlikely to be connected to my arthritis.
So doctors again tomorrow let's hope it will get me somewhere. I need it sorted, I want to be able to drive! Not being able to would be like not being able to see or hear or talk. Far too devastating to articulate.
Again I am stuck at home as understandably I'm a health and safety risk at work. Trying to stay positive as I don't want to get too down as that won't help but its so hard, its like a constant battle!!
On a positive note results from blood test 1 are eventually back and got the result we were hoping for so just a waiting game for blood test 2 results.
Surely things can only get better.
Thursday 1 December 2011
Always listen to your mum, they always have been right - whats the chances of that changing?
Getting a little nervous again as I have 2nd set of blood test taken tomorrow, not as worried as last time as I know what to expect. And I know that this time I will not look when the cotton wool is taken away; that'll save me going woozie!
How long can you possibly have a cold for - 10 weeks and counting!!! So my good ole mum has convinced me that its time to see the doctor again. The thing is i am slightly stubborn and don't like to admit i'm ill or have anything wrong at all. I called my mum this morning and mentioned to her through the course of our conversation that i have been getting chest pain and that i have started having fits again like what I had when I was in my teens. The concern in her voice was enough for me to agree that I would go and see a doctor.
So tomorrow morning it will be on the phone as soon as it turns 8am, to fight to get through to get an appointment; but it makes more sense going to the doctors sooner rather than later and coinciding it with my blood tests, if i manage to get through before all the appointments are taken. Its funny no matter how old you get you still listen to your mum! Love you Mum, thanks for worrying about me so much x
How long can you possibly have a cold for - 10 weeks and counting!!! So my good ole mum has convinced me that its time to see the doctor again. The thing is i am slightly stubborn and don't like to admit i'm ill or have anything wrong at all. I called my mum this morning and mentioned to her through the course of our conversation that i have been getting chest pain and that i have started having fits again like what I had when I was in my teens. The concern in her voice was enough for me to agree that I would go and see a doctor.
So tomorrow morning it will be on the phone as soon as it turns 8am, to fight to get through to get an appointment; but it makes more sense going to the doctors sooner rather than later and coinciding it with my blood tests, if i manage to get through before all the appointments are taken. Its funny no matter how old you get you still listen to your mum! Love you Mum, thanks for worrying about me so much x
Tuesday 29 November 2011
How difficult can it be?
So when ordering my repeat prescriptions I also ask for more folic acid (yes just the folic acid they advise anyone wanting a baby to take). I pick it up today and its not there; OK so it wasn't on my repeat list but they have my records and know why I am taking it so when I request it surely its simple? I get told I'll need to book a telephone appointment so I speak to the receptionist to arrange this and as it was last prescribed in August (which figures as it contains 90 tablets and you take one tablet a day) I have got to go in and see a doctor. As if I don't already feel like I live in the doctors or hospital, now I have to go and waste the doctors precious time to get this sorted. On top of that to pre book an appointment which I need in order to know when it is so I can arrange it with work, so I have to wait until 12th December. Luckily I am in a habit of getting prescriptions early so I should have enough.
So frustrating though!!! Why cant anything be easy. I'm glad I wasn't having a day like yesterday otherwise it would have brought me to tears. I suppose it just gets on top of me sometimes, the pain is enough!
So frustrating though!!! Why cant anything be easy. I'm glad I wasn't having a day like yesterday otherwise it would have brought me to tears. I suppose it just gets on top of me sometimes, the pain is enough!
Sunday 27 November 2011
The Big Fight
How I love the weekends, but why do I find it so impossible to sit and do nothing. I don't like letting the arthritis dictate what I can and can't do - its done that so much lately; so this weekend I decided to fight it even more than usual. Ask my husband and he'll just say its me being stubborn.
As it was my dad's birthday we celebrated Friday night by going out for a meal and as he loves karaoke I suggested going on to a pub for this (nothing to do with the fact that i love karaoke!). It was really nice being out and being awake past 9pm and as it took me nearly 4 hours to shower, wash my hair, dry my hair, make up and get dressed it had to be done! Apart from the pain and having to alternate between standing and sitting for the entire night I actually felt closer to my age and less guilty than I usually do. Why am I guilty? Well I'm 25 and hubby is only 26 but has to look after me a lot and my arthritis limits what we do, so we spend a lot of time at home. It was really nice to see him enjoying himself and he even got up and sang - I was so proud.
I woke up saturday no more achy than usual so I was pretty pleased with that I just felt quite tired but it was to be expected having a late night and then struggling to sleep next to the snoring husband and dog! Yay one night of the fight quite successful. A visit to the parents and then Tesco for our shopping, using the trolley to keep me on my feet rather than the stick - quite a novelty! This was then followed by a restful afternoon watching a film before starting the task which exhausts me most, getting ready to go out again, it didnt take as long as my hair was sorted from the day before. Then off to sudbury for my friends engagment party. We were talking and isnt it funny how quickly things can fall into place, only three years ago we were sitting at uni getting fed up with the men which were in (or more often in my case out) of our lives and wondering if we would ever be lucky in love. Look at us now, me married, her engaged and nearly qualified as a teacher which we both wanted. I took one look at her last night with her future husband and all I could do was smile. It so nice to see such an amazing friend as happy as I am.
Unfortunately the 40 minute drive hurt and after an hour of being at the party I was aching all over and my body was crying out for my bed. It was a good fight this weekend but the arthritis was really going for a knock out. I crashed as soon as my head hit the pillow and had a relatively good sleep and then woke up this morning and the pain hit again. Swelling in my hands and fingers making it so painful just to grip and my body feeling bruised all over.
Stubborn as always I will not let it stop me, so up we get to carry on with todays plans. I have some over the knee toe socks which I have wanted to wear all week but due to the tightness of the material I cant get them on myself but today I got them on. Admittedly my husband put them on for me, but none the less they are on my feet as i type. A visit to the inlaws and then Sainsburys to pick up a few bits we couldnt get at Tesco. I was walking around hanging on to Hubby's arm and felt a little like a zombie and again felt bad for him. This time to the point that I had to ask him if he ever gets embarassed at how slow I walk and how I struggle. His answer, 'no, your height is the only thing which bothers me sometimes because I feel like a giant.' I cant believe thats all he is worried about when I am like this, what more can I ask for? If he is a giant he is definitely my gentle giant!
I have now just finished making a batch of cakes and releasing my inner child; getting in a mess with the icing and sprinkles and licking the remains of icing from the bowl. My biggest frustration of the weekend was not being able to even make cakes by myself, needing help to beat the mixture because of the weakness in my wrists. Grrrr! I'm going to put this fight down to a draw.
As it was my dad's birthday we celebrated Friday night by going out for a meal and as he loves karaoke I suggested going on to a pub for this (nothing to do with the fact that i love karaoke!). It was really nice being out and being awake past 9pm and as it took me nearly 4 hours to shower, wash my hair, dry my hair, make up and get dressed it had to be done! Apart from the pain and having to alternate between standing and sitting for the entire night I actually felt closer to my age and less guilty than I usually do. Why am I guilty? Well I'm 25 and hubby is only 26 but has to look after me a lot and my arthritis limits what we do, so we spend a lot of time at home. It was really nice to see him enjoying himself and he even got up and sang - I was so proud.
I woke up saturday no more achy than usual so I was pretty pleased with that I just felt quite tired but it was to be expected having a late night and then struggling to sleep next to the snoring husband and dog! Yay one night of the fight quite successful. A visit to the parents and then Tesco for our shopping, using the trolley to keep me on my feet rather than the stick - quite a novelty! This was then followed by a restful afternoon watching a film before starting the task which exhausts me most, getting ready to go out again, it didnt take as long as my hair was sorted from the day before. Then off to sudbury for my friends engagment party. We were talking and isnt it funny how quickly things can fall into place, only three years ago we were sitting at uni getting fed up with the men which were in (or more often in my case out) of our lives and wondering if we would ever be lucky in love. Look at us now, me married, her engaged and nearly qualified as a teacher which we both wanted. I took one look at her last night with her future husband and all I could do was smile. It so nice to see such an amazing friend as happy as I am.
Unfortunately the 40 minute drive hurt and after an hour of being at the party I was aching all over and my body was crying out for my bed. It was a good fight this weekend but the arthritis was really going for a knock out. I crashed as soon as my head hit the pillow and had a relatively good sleep and then woke up this morning and the pain hit again. Swelling in my hands and fingers making it so painful just to grip and my body feeling bruised all over.
Stubborn as always I will not let it stop me, so up we get to carry on with todays plans. I have some over the knee toe socks which I have wanted to wear all week but due to the tightness of the material I cant get them on myself but today I got them on. Admittedly my husband put them on for me, but none the less they are on my feet as i type. A visit to the inlaws and then Sainsburys to pick up a few bits we couldnt get at Tesco. I was walking around hanging on to Hubby's arm and felt a little like a zombie and again felt bad for him. This time to the point that I had to ask him if he ever gets embarassed at how slow I walk and how I struggle. His answer, 'no, your height is the only thing which bothers me sometimes because I feel like a giant.' I cant believe thats all he is worried about when I am like this, what more can I ask for? If he is a giant he is definitely my gentle giant!
I have now just finished making a batch of cakes and releasing my inner child; getting in a mess with the icing and sprinkles and licking the remains of icing from the bowl. My biggest frustration of the weekend was not being able to even make cakes by myself, needing help to beat the mixture because of the weakness in my wrists. Grrrr! I'm going to put this fight down to a draw.
Thursday 24 November 2011
Catch 22?
The last couple of days have been a struggle, taking me about 45 minutes just to get out of bed, but you have to keep soldiering on! The pain has been immense in my feet and hands, the struggle to grip my walking stick which is helping me walk makes me giggle. Bit of a catch 22! Something to help you hurts to use!
Although I always have so many people around me and a really supportive family and friend network; i still often find myself feeling very alone. Since I met this lovely lady; I feel like I'm not alone anymore - its nice to know that someone can truly understand my day to day experiences and this struggle due to first hand experience. Its just unfortunate that they too have to suffer from arthritis. Its nice to know I am not the only one going through this challenge of having a family when dealing with the pain and exhaustion of Arthritis. To see a similar story to mine please check out: http://operationuptheduff.blogspot.com/
Although I always have so many people around me and a really supportive family and friend network; i still often find myself feeling very alone. Since I met this lovely lady; I feel like I'm not alone anymore - its nice to know that someone can truly understand my day to day experiences and this struggle due to first hand experience. Its just unfortunate that they too have to suffer from arthritis. Its nice to know I am not the only one going through this challenge of having a family when dealing with the pain and exhaustion of Arthritis. To see a similar story to mine please check out: http://operationuptheduff.blogspot.com/
Tuesday 22 November 2011
Is it Friday?
Ok so i'm not yet back on full hours at work yet it feels like I have already worked a whole week and still got 3 days to go. I'm completly exhausted but have to force myself to keep going. I considered a nap this afternoon when I got home but if I was to do that it would mean I wouldnt sleep tonight when I need to; it would be a vicious circle and I'd have the same problem tomorrow. Instead I painstakingly peeled the potatoes in preparation for dinner and sat down to watch a film and do my usual bits on the laptop. Keeping the heating off so it doesnt send me to sleep being hot - OMG! Winter is certainly here.
There is so much hype about twitter so I set an account up however no idea what its all about really. Whats all the @'s and #'s all about?? I wanted an account to help spread the word about my blog as I am eager to get it out there to try and encourage others in the same position to do everything they want to do in life no matter how much of a struggle it is or how tiring things can be.
To anyone taking them time to read this, thank you, I hope you enjoy my regular rants and random thoughts which sometimes come out but I also help this helps you to understand what I go through, what other people go through on a daily basis but also if you are one of those people I hope this makes you feel like you're not alone. Follow me and comment if you like but most importantly enjoy!
There is so much hype about twitter so I set an account up however no idea what its all about really. Whats all the @'s and #'s all about?? I wanted an account to help spread the word about my blog as I am eager to get it out there to try and encourage others in the same position to do everything they want to do in life no matter how much of a struggle it is or how tiring things can be.
To anyone taking them time to read this, thank you, I hope you enjoy my regular rants and random thoughts which sometimes come out but I also help this helps you to understand what I go through, what other people go through on a daily basis but also if you are one of those people I hope this makes you feel like you're not alone. Follow me and comment if you like but most importantly enjoy!
Sunday 20 November 2011
A weekend of nothing and still exhausted!
Had a weekend of nothing much at all and still exhausted. Saturday was spent with a brief visit to see the nieces and nephews which was lovely - but I always get broodier when I see them, especially as my hubby's cousins little boy was there too and he was soooo cute! This whole baby planning exercise seems to be taking forever; its so frustrating, how it cant just be a simple process like so many others have the luxury of. Other than whinging about my aching arm from my blood test on Friday; I spent the rest of Saturday in front of the TV - You've been framed, harry hill and X factor in the company of hubby and my little brother. Out of nowhere my cold struck back again so got an early night and a nice lay in this morning. As Bruno Mars says 'Today I don't feel like doing anything' and that it pretty much what I've done; apart from hoovering and cooking dinner. A bit of a film marathon and waiting for x factor results now but wondering how I can still be so exhausted. Maybe its my mind work overtime??? Less than 2 weeks now until part two of the blood test - they say you shouldn't wish your life away; I'm not just the next few weeks until we have the results from the tests and get the go ahead.
Thursday 17 November 2011
Excited about the prick I used to dread...
Yay!!! The blood testing kit is here and the baby journey finally seems like it is beginning.
So I used to dread blood tests, and not because of the discomfort I am used to that. I think it is more the process of sticking a needle into me and draining my insides. Although thinking back I think it is actually more of a fear thing - when I was in hospital as a teen doctors tried to get my blood and just made a complete hash up of it. Then on one occasion they got a child's phlebotomist to attempt to take my blood, no gloves, blood spurting out everywhere all over the floor; somewhat resembling a crime scene. Difficult veins apparently?!? I eventually found an amazing lady which could take my blood easily at my surgery, I didn't trust anyone else to the point that when she was on maternity leave I avoided having my bi-weekly blood tests. Think I managed to go 8 months before the surgery dragged me in. I then met another phlebotomist at my surgery who managed to get something out of my veins but reverted back to the other one once she returned. Unfortunately not long after her return she chose to leave but at a similar time I began taking Enbrel, an injection treatment requiring self administered injection weekly. OK?!? Needle phobic, scared much? Err YES! I got over it though and before coming off my meds in August I was administering my injections without anyone being with me. That was a huge step for me. So the other lady which managed to get my bloods is now my phlebotomist - it is surprising how much trust you put in one person. She has gone out of her way to arrange my 'special' blood test TOMORROW; so you can find a jem in the NHS.
So I used to dread blood tests, and not because of the discomfort I am used to that. I think it is more the process of sticking a needle into me and draining my insides. Although thinking back I think it is actually more of a fear thing - when I was in hospital as a teen doctors tried to get my blood and just made a complete hash up of it. Then on one occasion they got a child's phlebotomist to attempt to take my blood, no gloves, blood spurting out everywhere all over the floor; somewhat resembling a crime scene. Difficult veins apparently?!? I eventually found an amazing lady which could take my blood easily at my surgery, I didn't trust anyone else to the point that when she was on maternity leave I avoided having my bi-weekly blood tests. Think I managed to go 8 months before the surgery dragged me in. I then met another phlebotomist at my surgery who managed to get something out of my veins but reverted back to the other one once she returned. Unfortunately not long after her return she chose to leave but at a similar time I began taking Enbrel, an injection treatment requiring self administered injection weekly. OK?!? Needle phobic, scared much? Err YES! I got over it though and before coming off my meds in August I was administering my injections without anyone being with me. That was a huge step for me. So the other lady which managed to get my bloods is now my phlebotomist - it is surprising how much trust you put in one person. She has gone out of her way to arrange my 'special' blood test TOMORROW; so you can find a jem in the NHS.
Monday 14 November 2011
Delays on the way from a to b!
So I'm still waiting for the blood testing kit to arrive following the foul washout treatment to rid me of leflunomide. The test is required twice, 14 days apart following the wash out. Still awaiting test one, then another 14 days until test two and then await the results which will hopefully confirm the levels have reduced enough to safely start trying to conceive.
Please, please don't take to long as any time I have a weak spot I consider going back on all the medication just to take the edge off how I'm feeling at the moment. But I want us to be able to have our family too much so I will not go back on the meds - thankfully I can't just get them with a click of the fingers; by which time I am over my weak spot.
Fingers crossed the testing kit will arrive this week and then I might just be able to see the light at the end of the tunnel.
Please, please don't take to long as any time I have a weak spot I consider going back on all the medication just to take the edge off how I'm feeling at the moment. But I want us to be able to have our family too much so I will not go back on the meds - thankfully I can't just get them with a click of the fingers; by which time I am over my weak spot.
Fingers crossed the testing kit will arrive this week and then I might just be able to see the light at the end of the tunnel.
Sunday 13 November 2011
Is a bargain really a bargain??
Took my annual shopping trip with mum, every year I feel older and the trip is more of a struggle but a trip I wouldn't miss for the world. Quality mother, daughter time; one of the things I can't wait to have with a child of my own. Maybe we could then make it Nannie, mother, daughter days!! How exciting!
Anyway most of the Christmas shopping is already done but when you see a bargain you just have to buy it. So the nieces get another present which means I have to search out a new bargain for the nephews. Is it really a bargain when you already had their presents and wasn't planning to get them anything else??? Think I'll have to work on this so my children aren't too spoilt!
Oh well, I love to see peoples enjoyment opening their pressies on Christmas day, so it will be worth it.
Think I'll be able to sleep for days now.
Anyway most of the Christmas shopping is already done but when you see a bargain you just have to buy it. So the nieces get another present which means I have to search out a new bargain for the nephews. Is it really a bargain when you already had their presents and wasn't planning to get them anything else??? Think I'll have to work on this so my children aren't too spoilt!
Oh well, I love to see peoples enjoyment opening their pressies on Christmas day, so it will be worth it.
Think I'll be able to sleep for days now.
Saturday 12 November 2011
Trying Something New
An interesting week, returned to work which was not only challenging through the pain but challenging in overcoming the nerves of going back after 8 weeks. Glad to say its complete and topped off by a team building day on Friday which helped me feel part of the team again.
So trying something new; it was suggested to me this week that I tend to be rather direct - whilst I cant see that changing any time soon, I will definitely consider who this works with and who it doesn't. But some traits I want to work on which have been highlighted to me are that I can be rather negative, stubborn and argumentative. I have to 'air' that it is hard to be positive about everything when I am living day in day out with such immense pain, discomfort and fatigue, but I suppose the journey from A to B, isn't just about getting there but also how I get there. I shall therefore try to become more positive; which in turn will hopefully remove some of my argumentative and stubborn streaks as I will try and take a positive from everything. So my positive today is definitely that its the weekend and I get to spend it with those most important to me; family and friends. Not everyone is lucky enough to have such amazing support networks in their life.
Well that was exhausting admitting weaknesses; the physical weakness is bad enough, but the first step is always admitting you have a problem.
Have you ever tried spicy broad beans???? Weird I know but yummy!!! This was my 'something new' I tried today when attending an open day at a Moroccan shopping site. Take a look for yourself; http://www.maroque.co.uk/
So trying something new; it was suggested to me this week that I tend to be rather direct - whilst I cant see that changing any time soon, I will definitely consider who this works with and who it doesn't. But some traits I want to work on which have been highlighted to me are that I can be rather negative, stubborn and argumentative. I have to 'air' that it is hard to be positive about everything when I am living day in day out with such immense pain, discomfort and fatigue, but I suppose the journey from A to B, isn't just about getting there but also how I get there. I shall therefore try to become more positive; which in turn will hopefully remove some of my argumentative and stubborn streaks as I will try and take a positive from everything. So my positive today is definitely that its the weekend and I get to spend it with those most important to me; family and friends. Not everyone is lucky enough to have such amazing support networks in their life.
Well that was exhausting admitting weaknesses; the physical weakness is bad enough, but the first step is always admitting you have a problem.
Have you ever tried spicy broad beans???? Weird I know but yummy!!! This was my 'something new' I tried today when attending an open day at a Moroccan shopping site. Take a look for yourself; http://www.maroque.co.uk/
Wednesday 9 November 2011
Whats in a stick??
Its funny how big everywhere can suddenly seem when you are in so much pain, the shortest of walks take it out of you. Just walking from my desk to the bin, but is it in some part because I feel every one is watching me too; after all I'm 25 and relying heavily on a walking stick currently. I cant make out what the looks are, are people feeling sorry for me or do they no longer know what to say to me??? Yes I'm in pain about 120% of my day at the moment but I just want to get on as best as I can, I'm still me! Feel sympathetic that I have to deal with this horrible disease everyday but dont pity me I'm still lucky, I have an amazing family and wonderful friends - there are so many people worse of than me and I'm sure they wouldnt want pity either. All we really cry out for is a bit of support and understanding.
Arthritis is difficult for anyone to understand who hasnt experienced it themselves and for those of you who havent experienced it, I hope you never have to. So heres to my bright purple stick which is my support when no one else can be!
Arthritis is difficult for anyone to understand who hasnt experienced it themselves and for those of you who havent experienced it, I hope you never have to. So heres to my bright purple stick which is my support when no one else can be!
Tuesday 8 November 2011
A Long 4 Hours
Well today I returned to work following 8 long weeks at home. Just 4 hours to help me settle in but it seemed so much longer. I loved being back and being out of the flat but it really was a struggle.
The Story so far is....
.....following diagnosis of RA about 10 years ago I have tried lots of different combinations of treatment to get my arthritis into remission. I havent found many drugs helpful and 3 years ago thought I may have found the reason. It was decided that I actually had PSA and I went onto Enbrel (after a challenging process to be accepted to have this!), It was like a miracle, I felt awesome. Unfortunately this didnt last but my arthritis remained under better control. Yes I still had flare ups, but all in all things started looking much more positive.
When I got engaged to my wonderfully supportive hubby Adam in October 2010, we decided that once we were married we wanted to start a family. We planned the wedding for 23rd July 2011 (it was so amazing, but the day passed far too quickly). Thats when we found out about the long haul planning process to have a baby. Luckily lots of people dont have this to worry about, but there are also lots of people whose 'planning for a baby', really does involve more planning than the average couple faces. I began coming off some drugs in November 2011 and the others I came off straight after the wedding, I felt really good for a while afterwards; better than I had in ages. Almost human rather than 'drugged up', Normal if thats possible! Unfortunately I got a cold and my flare up started but my focus remains on why I am doing this, to have a family just like so many millions of people do everyday. 'It's all about getting from A to B'.
The Story so far is....
.....following diagnosis of RA about 10 years ago I have tried lots of different combinations of treatment to get my arthritis into remission. I havent found many drugs helpful and 3 years ago thought I may have found the reason. It was decided that I actually had PSA and I went onto Enbrel (after a challenging process to be accepted to have this!), It was like a miracle, I felt awesome. Unfortunately this didnt last but my arthritis remained under better control. Yes I still had flare ups, but all in all things started looking much more positive.
When I got engaged to my wonderfully supportive hubby Adam in October 2010, we decided that once we were married we wanted to start a family. We planned the wedding for 23rd July 2011 (it was so amazing, but the day passed far too quickly). Thats when we found out about the long haul planning process to have a baby. Luckily lots of people dont have this to worry about, but there are also lots of people whose 'planning for a baby', really does involve more planning than the average couple faces. I began coming off some drugs in November 2011 and the others I came off straight after the wedding, I felt really good for a while afterwards; better than I had in ages. Almost human rather than 'drugged up', Normal if thats possible! Unfortunately I got a cold and my flare up started but my focus remains on why I am doing this, to have a family just like so many millions of people do everyday. 'It's all about getting from A to B'.
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