Farewell For A Bit

So, I am finally going on a trip tomorrow after months of waiting. As most of you know, I couldn’t go through with my original travel plans last year as my RA and treatment got in the way. I have been waiting so long through this cold winter to experience some warmth from the sun again, which generally makes us all feel better. I fly to Mexico early in the morning and whilst I am incredibly excited about the relaxation and surroundings ahead, I am a little apprehensive.

The thing is, I am always apprehensive about anything I plan to do these days for fear RA will ruin what I had in mind. I fear a flare up especially but most of all the uncomfortable plane journey. However, that’s the price I pay for attempting to enjoy life and I am happy to pay it. I know I will look like a crippled old aged pensioner when I attempt to leave the plane after a ten hour flight but I don’t care. The relaxation and enjoyment of a holiday is something I need right now. It’s kind of the end of the chapter in my life without work as when I return, despite the odds, I am launching my own business.

I have been thinking about returning to work for some time, partly because I feel my condition has improved as much as it ever will but mainly because I simply cannot sit around and wait for things to happen anymore. I despise not having a reason to get up in the morning. I hate not having goals to achieve. As I have not found a suitable position to be employed in, even though I have tried (hard), I have decided to take the matter into my own hands and do something I am passionate about. I am going to make cakes for a living! Random, I know, but it is a business that reflects my creativity and organisational skills and my love of cake (of course). Having my own business means I am not restricted by an employer or hours of work. I can work flexibly, which is so important when you have RA cause frankly you never know how you’re going to feel one day to the next. I can make as much out of my little idea or as much as I choose.

I am incredibly excited about having something to work towards and something that I can inject all that creativity that’s been stored away through my darkest days with this illness. I know times are hard for everyone in business right now but I intend to do the best I can, if I make a little money... great! If not, well at least I gave it a shot. I can sit here and wait for one of the few jobs I am not really interested in to fall in my lap or I can go out there and do it on my own and that’s what I have chosen to do.

It’s going to be hard work and will require determination, but I am so ready for it. Gone are the days spent alone at home waiting for the family to return from work. Gone are the days of being envious, yet proud, of friends for their successful careers. Now is my chance to prove I am worthy in society again, because job hunting in this climate (despite having plenty of experience and a degree under my belt) is degrading and disappointing.

So, I am signing off for a couple of weeks my friends, but don’t fear... a full report on Mexico will be given upon my return. Wish me a ‘crippled like an OAP’ free journey (I will be wearing some rather fetching flight socks too!). Adios amigos.

Success Story

Have you ever had one of those moments where you look around a room, take stock of everything and realise how lucky you are? Well I truly had one of those moments on Saturday evening. I have been mentioning for a while about a fundraiser I was organising for Arthritis Care and the event, I am pleased to say, was an absolute success. I really couldn’t believe the amount of support I had from local and not so local people this weekend. I had been dreading for a while that only a handful of people would turn up and my efforts would have been wasted and my target would not be met. But I am so happy to say my fears were unfounded.

I stood on the stage, shaking with microphone in hand, staring at the beautiful faces in front of me in complete shock. I had to make a speech about why we were all there and try and thank people for their amazing support. My voice trembled and I was close to tears as I realised what truly amazing friends and family stood before me. After all the low points in my life, that moment made it all worth it. It is incredible to feel so lucky that people went out of their way to show their support for the charity and me.

I spent the day as a nervous wreck, stressed to the point of exhaustion due to the fact some ignorant people had let me down and I only had a handful of people to help me pull off this massive event. I am so grateful to those who turned up and were rushed off their feet helping me to plan the evening, but I couldn’t hide my disappointment at those who failed to show up (and didn’t even call to explain why). But those handful of people were so amazing that it didn’t matter.

The fashion show went down a storm and my models looked beautiful. The evening was a massive blur if I am honest. Trying to get round to speak to everyone proved harder than I thought and I can only apologise if you came and didn’t get near me! I tried my best to thank everyone for their help and for coming along but I wish I could have had more time to see everyone. Please know that I thank you all from the bottom of my heart for your support.

We had a raffle, auction, live music amongst other things and I think everyone went home happy and had a great time. I couldn’t believe the final sum we had raised, over £5000. I only dreamed of raising that much so I am really proud of everyone’s hard work to pull off a great night and raise such an amazing amount.

I think it’s fair to say I am absolutely exhausted and drained this week. I haven’t worked so hard for a very long time, but it was so important to me that I don’t mind a few days of pain and exhaustion. I am in desperate need of a rest but as some of you may know, the aftermath of a fundraiser requires more work in the form of thank you letters, press interviews etc which I am more than happy to do. I know that when all of that is out of the way I will be sad that the months of organising my event have come to an end. I feel incredibly lucky to have such an amazing group of friends, some of which travelled a long way to be there. I am going to shut up now because this is starting to sound like an award winner’s speech! No awards for me, just the reward that maybe those who were there or who have read about my story may have a little bit more of an understanding of arthritis in young people. Thank you and goodnight.

Stress... Good for the Soul?

Doctors often mention to me that stress when you have RA causes it to flare and I’ve often wondered how likely this is. I have learnt the truth this week however, what with the various ‘stresses’ I have been dealing with. Obviously organising my fundraiser comes with its minor stresses, and the general anxiety of wondering if it will go alright on the night adds to that. I have also been overwhelmingly worried about money with the fact job offers are nonexistent. So I have decided to start my own business (more on this soon). The amount of preparation for that is also putting strain on me. So, to cut a long story short, these weights I am carrying on my shoulders have started to have an effect on my physical health. For starters, I am exhausted. I have not been sleeping well for a long time now and I am trying my best to alter my habit of having a nap in the day when I am tired but it’s difficult when your eyes won’t stay open.

Now my joints are being affected too. I have noticed that stiff, painful mornings are coming back on days I have lots to think about and days after I’ve had lots to do. So bloody frustrating. Am I supposed to sit around and do nothing so I don’t get stressed and cause a flare? I thought a little stress would be good for you. It’s certainly made me feel happier having things to concentrate on other than my life with RA. But does that mean I have to deal with the pain as just one of those things? You can’t have it all, right?

So I guess I’m probably stressing myself out for no reason. I am quite an intense organiser anyways, probably got OCD or something (but that’s another problem). I like to be on the ball with everything and ensure I’ve considered every eventuality so I need to maybe take a chill pill now and again. Problem is, I feel I’ve done enough ‘chillin’ since my diagnosis and actually feel guilty now when I need a rest because I have been doing better. I feel my friends and family won’t understand when I have bad days and that I am just making excuses to get out of doing something. They won’t realise that although I look alright and probably seem fine, underneath that mask I am suffering with pain or exhausted. They expect me to be well all the time now, like I am cured or something. I wish there was a soddin cure so I could get shot of this crappy fatigue I feel today. I wonder if wearing cocktail sticks to keep my eyes open is a bad idea?

One For The Ladies

Guys, you may wish to look away now. This week I’d like to write about something us ladies go through quite a lot, once a month to be correct, so you are probably guessing what I mean by that. From time to time my fellow females have asked me about the effects of RA in our monthly cycles and how it affects me. Before I haven’t so wished to talk about it (as it is quite a private matter). However, I know that some ladies are concerned that symptoms of RA have worsened around their ‘time of the month’. To be honest I have never really noticed this before but have made a conscious effort to study this in my own life before discussing it.

Now I have looked at it, I too have noticed that my RA is particularly bad around this time. More specifically, the lead up to that dreaded few days. I noticed increased pain levels, horrendous mood swings (which believe it or not I never really suffered before), and an increased level of fatigue. I know that it is perfectly normal for us ladies to have these kinds of symptoms around that time of the month but for ladies with RA is it any worse? The simple answer is, it totally depends on your body. Before my diagnosis, I was never particularly affected by (and here’s the horrible word) periods. I never suffered cramps or pain, I was generally in a bad mood every day of the month anyway (haha) and don’t recall feeling more tired or uncomfortable. That is the key word here for me, uncomfortable. I can only describe how I have felt recently around this time as INCREDIBLY uncomfortable. I actually want to ram most people’s heads into a fridge, bang my own head against the wall and generally want to curl up and die. (You may think this is a bit extreme but I’ve just had one of these weeks where I was so incredibly frustrated with everything and everyone that I didn’t even want to talk to the people I love).

The increase in pain was significant, especially as I have been doing reasonably well lately so I really have noticed it. The main thing is that horrible flu like feeling where you ache like hell from head to toe and want to sleep all the time was amplified by about a million percent. My sleep pattern was disturbed, not that I sleep that great anyways these days but waking up every hour on the hour in the night is not a good look throughout the day. My eyes look like they are carrying large, dark suitcases right now.

Scientifically, and here’s the evidence bit, when women are experiencing periods and hormonal changes their pain thresholds are lower and sleep is disturbed. I had this confirmed by my doctor this week. Therefore, if your pain threshold is not as high, you will feel your RA pain more and if sleep is disturbed your fatigue will worsen. I am sure we don’t all suffer the same but it’s interesting to see the connection between your gender and the severity of RA.

One positive piece of news I discovered this week is that I was sure I had read somewhere that when considering to have children, I would have to come off all treatment one year before conception. Apparently, according to my rheumatologist, this isn’t the case. It is only six months prior to conception that you need to be free of treatment for. So this is great news for me, coming up to twenty five this year it’s nice to know I don’t have to necessarily plan so far ahead how my life is going to go. And don’t worry; I don’t plan on any mini me’s anytime soon. Besides, I have rammed my boyfriends head into a fridge so I don’t think we will even be speaking for a while..... I’m just kidding.