Thank You Letter

 Firstly, my apologies for not getting back to the many people who have sent emails and left comments on here. I am not being ignorant if I haven’t replied to you, I’m just not feeling the best at present. I am in migraine city, which I think is due to the Rituximab and in a constant state of dizziness and nausea (whoop party time!). But I wanted to use this post to say a huge thank you to those who have got in touch. I honestly love hearing your stories and I am very grateful you are following the blog. Your stories have touched my heart and even though it’s awful to hear you are going through pain and suffering like me, it emphasises the fact we are not alone.

 I have truly enjoyed telling my story and encouraging others to be open about their conditions, if anything I hope you feel a sense of release and relief. I never intended to become a spokesperson for arthritis; I simply wanted to see if there was anyone else out there like me who I could share my story with. But you have all made it possible for me to be confident about my condition and encouraged me to do more to help others.

 I finished my second Rituximab infusion on Friday, which went a lot quicker than the first but was still a full day on the ward. I am glad it is over with now, and have the scars to prove it with a giant blue and purple bruise on my hand from the canular. It will be a while before I feel any improvement I guess, like all things with RA it’s a waiting game. But as long as my suffering is slightly improved by Christmas I will be a happy girl. I don’t want to have to creep off to my room to rest on Christmas Day this year. Last year I was so uncomfortable I couldn’t bear to sit at the dinner table for long so you can imagine how miserable I was.

 So I write to you with great appreciation for your correspondence from my bed, whilst I try and recover from having litres of drugs pumped into me. I hope that you continue to stay in touch and give me updates on your stories. Once again, a million thank you’s.

Just Don't Know What To Do With Myself...

This week I’m coming to you live from Australia! Oh, No... That’s right I’m not. I was supposed to be in sunny Sydney as we speak, but as I previously discussed, RA reared its ugly head to destroy my plans of a trip across the world with my lovely friends. Am I bitter? Of course not... well maybe a little. You see when I first found out I couldn’t go, I was devastated but soon got over it realising my health is more important. But now the time has come around where my remaining closest friend has flown out to be with my other travelling friends, on the flight I was supposed to be on may I add. It’s safe to say I’m feeling a tad down this week.

 I think loneliness is definitely setting in. Don’t get me wrong, I have plenty of other close friends that are still in (freezing) cold England, but it’s not the same without my girls. They have been so supportive over the past year and I suppose it’s true what they say, you don’t know what you’ve got till it’s gone. (They are coming back of course, it’s not like they have all emigrated to the other side of the world... unless that was their plan all along and they chose not to tell me!) I miss them all dearly. I am finding things a lot harder than I anticipated.

 I feel like I can’t just pick up the phone and rant (as I often do) or chat about everything and nothing. I am alone with my thoughts a lot of the time (which I hate) and because I am not doing too well with my RA and feeling a bit gross after my Rituximab treatment it’s not like I can go out and make my own fun at the moment. I wish more than anything today that I didn’t have this limiting disease. I always imagined myself travelling the world, being an independent soul and experiencing other cultures but as time goes on those experiences are slipping from my grasp. Other things such as pratting about in hospitals for eight hours strapped up to machines and being deafened by the unnecessarily loud nurse are my priorities now, apparently. (Christ the nurse across the ward really did get my goat today, shrill isn’t even close to the world).

 So, I guess the question is what to do with myself now? I am surely doing my family’s head in right now with my moping and my boyfriend is most definitely sick of hearing female gossip (as I don’t have many people to tell!) But they are as supportive as ever and dealing with my ‘Moody Trudy’ moments surprisingly well. I only hope I have recovered enough from this bad patch to enjoy Christmas and that my health returns to a good enough state so I can go see that big wide world next year... it’ll still be there won’t it? I hope my travelling friends are having the best time they could have and do not feel guilty for leaving me behind because, if anything, I am looking forward to hearing about their adventures when they return plus presents! (and there’s always Photoshop to make it look like I was there).

Christmas Mission Impossible

I attempted the sheer madness of going to a Christmas market at the weekend. I usually love the build up to Christmas, with the exception of last year when I couldn’t move for pain! I love the crisp, cold air outside, the smell of mulled wine and the excitement of buying presents for loved ones. I must admit having RA makes it more difficult to look forward to things, especially this time of year. I have a habit of feeling faint and very tired, due to the meds I take I suppose, which makes Xmas shopping a bit of a nightmare. I can no longer make a day of it at a shopping centre, because I would simply have a heart attack or something with all the stress and inevitable ill feeling I would have. So I opt to do my shopping trips in short bursts, giving up when I feel tired.

 So the Christmas market was once again an experience. I typically awoke with a very swollen knee that day but I didn’t want to miss out so chose to go along with friends and my boyfriend anyway and deal with the pain later. Turns out, I didn’t cope that well with the pain after all. After walking through the streets of Manchester for a little while my knee began to swell even more. I tried to have fun and take in the entire Christmas atmosphere, but being surrounded by crowds of people when you aren’t feeling the best is not the greatest idea. I didn’t get to sample the delights of mulled wine and all the festive treats on offer because I felt sick and fed up. I also felt horribly guilty that I was making it not so fun for everyone else as well with my moping (but as most of us do, I put on a brave smile and carried on).

 In the end, my leg became so swollen that it was weak. I literally couldn’t put much weight on it for fear it would give way and I would topple over amongst the sea of people and get covered in mulled wine! I politely made my excuses and decided it was best to get home and rest for a bit. By this point I was so nauseas, the smell of beer and sickly sweet crepes on offer at the market nearly made me throw up. So, once again, I had to terminate the fun for the sake of my moaning and groaning body and retire to bed for the rest of the day. I am happy I got to experience a little Christmas cheer for the first time this year, but I can’t help wishing that for once I could have a day when I feel completely well so I can enjoy such festivities with my friends again. I swear, you should never take these things for granted because its only when you can no longer do things that you realise how much you enjoyed them.

 I will not be put off by the mission impossible of the Xmas markets, even if I have to abort another mission early, I am determined to drink at least one mug of mulled wine and eat lots of Christmassy food on an outing with my friends this year. Wishing you very successful festive missions in preparations for Christmas!

Cash Back

Ever since I made the mutual decision with my employer to give up my job, my financial situation (on top of everything else) is a worry. I know this is the case for many people in this day and age, illness or no illness, but I often get stressed about the future of my financial situation. I have always intended to go back to work when I am fit and well but as time goes on its harder to see the finish line in this world of unemployment. As I mentioned before, I keep myself busy with volunteer work to keep my mind active and give me some sort of purpose (more a reason to get up in the morning). At present I am happy with my ratio of volunteer work and rest, but obviously I wish I had the ability to do more.

 Coming from a hard working family means I have always had a good work ethic. So it’s hard to see my family going out to make a living around me when I am stuck at home because of my illness. I would love more than anything to have a ‘normal’ working life, where your weekdays are for work and evening and weekends for play. I miss the interaction with colleagues and the responsibility and pride that comes from doing a good job. I do my best to get this satisfaction from volunteering and creating awareness. That is why I have put myself out there for the world to see.

 The prospect of benefit reforms in this country is a little worrying. Simply because I know from personal experience it is always the most vulnerable that suffer hardship and have to explain themselves for not being at work. Arthritis is a fluctuating disease that means sometimes you’re reasonably well and could probably do a days’ work. But on most days this is not the case and you may well be confined to your bed. This is why it will be hard to judge who is eligible for benefits under the new scheme. Medical exams for Disability Living Allowance, for example, have shown in the past for me that I was perfectly capable of work which couldn’t have been further from the truth. And now, the prospect of having all benefits taken away if you fail these ‘tests’ and being forced back to work is daunting. I wonder how the government intend to help these people with disabilities, which are not necessarily deemed severe enough to be on benefits, to make a smooth entry back into the workplace?

 I am fortunate that I have a roof over my head. I live with family who provide me with what I need at a small cost which suits my very low income from the benefits I receive. But I know that many people with this disease do not have this ‘luxury’. They live alone, have no family close by and have to go out to work to meet ends meet. I do not pity those people, I admire them greatly as I don’t know where I would be without the support of my family. I had to return home to my parents because things had got so bad, I couldn’t afford to live alone and I couldn’t afford to live without the physical and emotional support they provide. I encourage those who are in the situation of struggling with your disease and finances to seek help, sooner rather than later before all these changes take place.

Rituxi - Madness

So here is the story of my second Rituximab infusion which took place in all its glory on Friday. I mentioned before that I was a little nervous about it, I’m not really sure why. The thing that frightened me most on the day was that the infusion was given in the cancer ward of the hospital, making me realise just how serious this condition is. The fact that I was mixing with people having chemo and blood transfusions (amongst other things) was a little off-putting. But I tried not to think about that.

 The nurses, as usual, were lovely and welcoming but I had the feeling it was going to be a very long day. It’s funny that hospitals have this weird affect on me. I have been in them so many times before but I can’t shake the feeling that something is going to go wrong or I will get told some awful news when I am there. I relaxed into my surprisingly comfy chair (which was an electric recliner, hell yes!) while the nurse punctured my hand with the canular (which may I add was ridiculously painful).

 The treatment itself usually takes around 5 hours, with the infusion being fed through a drip into your body, but with all the other things I had to have (saline solution drips, steroid infusion, constant hook ups with the obs machine) it’s pretty much a full working day in the chair. Once the treatment started my nerves seemed to fade, I think I was relieved it was finally happening. My mum was there for company which was great, don’t think I could have sat there in good spirits all day without her.

 I was exhausted after the first hour or so, trying to drift off to sleep but every half an hour I was strapped up to the obs machine to check my temperature etc so it made it difficult to nod off. The usual hot flushes, extreme tiredness and dehydration occurred throughout the day. I honestly felt like I was going through the menopause or something with the ‘granny sweats’ (as I call them) I kept having. But it was all fine. I finished up the infusion early evening and was allowed to go home. All I wanted to do was eat and sleep. It’s amazing that doing nothing can make you feel so exhausted but I suppose your body is trying to process what has just been poured into it.

 The day was made slightly more exciting with the edition of Company magazine that I feature in being out in the shops. Mum rushed to get a copy and we had a good read of what is an incredible article, I must thank the team at Company for that. It’s pretty exciting that my story is being heard and I hope it helps some other young people find some comfort that they are not alone and things can get better with a little positivity. I have only been asked for my autograph once (but there’s still time as it’s out for a month!) That’s enough Rituxi-madness for one week, I’ll be back to do it all over again in 2 weeks time... when will the party end!

A Slight Exaggeration

 The frustrating thing about having RA is that the slightest illness is multiplied by a thousand to make you feel like utter death. I have recently been suffering with a viral thingy (much like a cold) but on several days it has felt much worse than that. With RA, your immune system is shot to pieces anyway so a simple cold can turn nasty quite quickly. However, as there is no cure for viral infections, you can only wait it out (which takes a lot longer for us than a normal person, who can get over a cold in a few days with rest).

 You may think I am exaggerating, but I only exaggerate slightly when I say with RA, a cold is like pneumonia, a rash is like the plague and a paper cut feels like an amputation (ok so I am probably exaggerating a tad more on the last one). You get the idea right? I have had this cold for going on three weeks now, that is not normal. I have been doing all the right things, resting (being bored), drinking lots, getting as much Vit C as possible but nothing seems to work. I will just have to ride this evil cold out for a bit longer.

 I have taken up knitting again to cure my boredom. You may laugh (frankly I laugh too as my image of an eighty year old becomes clearer with this admission) but it is actually quite therapeutic. My dear friend Charlie taught me how to knit last year when I was very, very low and it helped clear my mind. It was also a great way for me and my mum to spend time together when I returned home. We started to make a patchwork blanket together which turned out to be amazing (even though mum did do most of the work as my wrists and fingers were quite bad towards the end). But I am now the proud owner of a beautiful knitted blanket that I intend to keep forever and maybe pass down to any little ones I have. My point is, knitting is not just for the oldies if you create something you love rather than Christmas jumpers and dodgy scarves.

 Anyway I will continue with my knitting, I am making another blanket for a little person in the family in time for Christmas (wish me luck with that because if I get bored my mum will not be impressed with me passing the needles along again!).