Introduction

Hi, Thanks for viewing my blog. It lets me have a rant and I may even help someone along the way. Got the idea to do a blog following using an Arthritis Forum for the first time at www.arthritiscare.org.uk

I suffer from Psoriatic Arthritis which is very demanding in all aspects of my life and this is my story on how I deal with it on a day to day basis.

I have been spending lots of time recently researching arthritis and pregnancy, there isnt loads of information out there and the most helpful thing i have found to date is forums and hearing other peoples story. This just confirms to me why I am 'blogging', if someone like me wants to know they are not on their own.

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!

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.

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/         

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!

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.

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.

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.

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/

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!

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'.