Self Assesment

Last week my partner and I had an interesting discussion about our personality traits, which I thought I would share with you. He was given this self awareness type questionnaire at work and we thought it would be fun to see how we compare on things like leadership skills, social skills etc. Ultimately  it encouraged me to find out things about myself that I wasn’t necessarily aware of. Apparently I make a good leader (which is pretty good considering I run a business) but I lack confidence in my abilities. Of course I instantly related this back to my health. My lack of confidence stems from uncertainty about my illness and whether I can actually complete tasks and challenges.

What I also realised is that I haven’t been a nice person to be around lately. I have been trying to put more effort into work and getting back to a relatively normal life following my hip operation and it has left me exhausted. As a consequence, I am horrible to those closest to me. Snapping at people, short tempered and generally lacking in patience with everyone has been an everyday occurance. When you are trying your best just to get through the day, you don’t have much energy for anything else. I know it doesn’t take much to be nice to people or sociable but when your life seems like a constant effort to do even the smallest things, it’s pretty hard to keep a permanent smile on your face.

I have found it incredibly hard to control my constant feeling of being tired and fed up. I don’t know how others do it but the thought of making conversation about pretty much anything last week was daunting. Frankly, I just wanted to be alone. Lock myself away in my mood and only come out when I was ready to be a normal person again. Stress can make anyone feel short with people. You can feel like you’re fighting a losing battle everyday with RA and this is more stress than we deserve let alone worrying about day to day things like paying the bills, cleaning the house and washing your stupid clothes. Yep that’s right. Last week, and a couple of weeks prior to that, EVERYTHING was stupid and pointless. What’s the point of smiling if everything is stupid? If everything hurts and is more effort than you can manage then just what is the point?

I was awoken from my mood to pleas from my loved ones that I stop being a pain in the ass and snap out of it. Although you may feel like crap, it’s not fair to constantly take it out on those around you and I know this. It just takes a little support and reminders from your loved ones that everything is going to be OK. As soon as I was called on my nasty mood and reminded that sometimes things are hard but I always get through it, I returned to my normal self (well i hope so anyway). I do feel like a big weight has been lifted when you are reminded that there is a reason for getting through every day. There is a reason you are constantly fighting this disease... if not for yourself then for those you love and love you back. If we can’t stay strong for them then we can’t expect them to hang around whilst our mood spirals out of control. I have to fight the urge to give up and let RA consume me every single day but I continue to fight. I continue to fight because I want a future and I want to be happy. I don’t want to be a bitter person who constantly reminds people about the bad hand I was dealt and how unfair everything is. We all know life is unfair anyway so why bleat on about it? Its not going to make a difference.

So, I guess what I am saying is, if you feel like your mood is on a downward spiral and you feel like giving up and screaming at everyone about how unfair it is remember your partner, children, parents or friends and how unfair it is for them to have to watch you suffer and not be able to do a thing about it. Take a deep breath and remember all the things and people you love in life and why you continue to get up every day and fight RA. You are not just fighting for yourself, you are fighting for them. You never win a battle without the support of others so if you rely on them to help you, it can’t hurt to smile along the way (even if it is through gritted teeth every once in a while).

Spilt Milk

A scary and confusing day for me. After the release of excruciating pain following my hip replacement it seems it has come back to bite me and I have had a couple of days of very similar, but not quite as excruciating, pain. I may have done too much, although my ‘too much’ isn’t the same as ‘normal’ peoples too much which is bloody annoying. I decided to put my fitness to the test last week after giving up smoking, and plus it would be nice to try and do some regular exercise to see if it makes much difference to my RA. Despite a swollen knee, me and my mum went to our local pool twice last week, which by the way was a great testament to local councils as disabled people are allowed to swim for free!

Both times I managed to do better than expected, I wasn’t particularly in any pain although found it a little difficult to get into the swing of moving about more than usual at first. I didn’t suffer too much after the half hour sessions either, which was a bonus. However, as I went through the weekend the knee started to get worse and the pain has slowly moved up my right leg and back into my hip leaving it really uncomfortable and now I have this constant dull ache in the hip which won’t subside, even with a regular intake of pain meds. So I am a little concerned now, and frustrated really. I don’t understand why I am experiencing pain in an artificial joint. It’s not the muscles and stuff around it so it’s weird.  Concerned that my two swim sessions and generally being on my feet rather than sat at home being bored for six weeks has taken its toll and this is a warning to not move... ever... or enjoy myself or do anything of any real value. Great.

Why oh frigging why does this happen constantly. I am laughing about it but so annoyed that I get slightly back on track or I am doing well (and I had a very impressive recovery from my hip replacement, if I say so myself) and then I get knocked down again. I hope I haven’t done any real damage for the simple want of doing normal things like a little exercise. I just want to be able to keep fit and do some sort of activity with my mum is that so much to ask?

So I am biting the bullet and having a few days ‘rest’ (in other words I am stopping myself from doing anything I actually want to do including swimming... begrudgingly) and I will see if things improve. To be honest I cannot even be bothered to start the cycle of doctors appointments and specialists again because its mind numbingly frustrating to have to plan stuff around them and by the time I have seen someone, the pain will be somewhere else no doubt. I just want to cry today. It’s not even that bad but the thought of having to go through all of that crap with my hip again and having the energy to sort it out is exhausting and I want to cry.

I could spend my night crying, or I could just swallow my frustration and tears and get on with it. Which at present is what I am trying to do. It’s got to the point today where I am so mad and fed up I don’t want to eat. I don’t want to go out or talk to anyone; I just want to sit alone in my mood in protest until things start to go right. Spoilt little child comes to mind but some days all this stuff to deal with just gets too much and I have to have my moods and tears in order to feel normal again. You let it consume you, let it all out, feel better and then start the cycle all over again. RA is too much today. Everything is too much today. I’m going to bed, pulling over the covers and hoping tomorrow is a good day, or at least a better day so I don’t scream at those I love or have a breakdown over spilt milk or something (has happened before with interesting results of extreme emotions).

Lottery

Isn’t it funny that with RA, when one thing gets fixed something else packs up? Take my hip for instance, after surgery and six weeks of recovery it’s feeling great and (touch wood) there have been no further problems. However, it seems that my body isn’t happy unless its battling something. Allow me to introduce my giant knee. It has made a grand return appearance this week and as usual, its larger than life personality is keeping me awake at night and struggling to walk during the day. Good thing I hung on to the crutches after my hip op.

I don’t know how you cannot get sick of this constant merry go round of swelling, pain and stiffness in alternate joints. It’s like a lottery pretty much every morning, guessing which joint or joints will be swollen or painful today, although you don’t win anything if you’re right. You go to bed with a sore wrist and wake up with a fat ankle... strange is all I can say.

I have thought a lot about the lottery this week... winning it in particular. Thinking about what the future may bring, I am becoming increasingly concerned about my finances. Yes, it is great having the freedom to run my own business and it is ticking over nicely but you can’t really expect to earn a wage until you are doing very well, so I haven’t relied on this as such. I suppose I always figured I would go back to full time work and earn a wage just like everyone else. As time goes on it’s becoming clear this may never happen. I am pretty much as well as I have been since my diagnosis and yet it’s still not ‘well enough’ that I could manage getting up and doing a full 8 to 9 hour day, five days a week. The thought alone makes me feel ill. I would love to be able to do this, don’t get me wrong, and not have to worry so much about money but the fact is I can’t. I can’t cope with that amount of work each day. The concentration, physical effort and consciousness it requires is more than I have to give.

I would love to say that my business will be a success and that it will one day make me the money a full time job would offer because my job is more suited to my condition. I work for myself so if I feel poorly all of a sudden or experience pain, I rest for a while and return to what I am doing when I can. This isn’t really possible in a normal day job. You can’t slip away from your desk for an hour to have a nap when you feel like it. If I feel awful in the morning, I will rest or sleep a bit longer (maybe until lunch time when the meds have kicked in) and then I will do my work... it’s possible to do this as long as I am meeting my deadlines. Again, you can’t really start work at lunchtimes whenever  you feel like it in a regular job. So you see my predicament?

I love to work, it keeps me sane. But I have to be in a role that allows me to keep control of my RA. A normal job just wouldn’t allow me to do this. There isn’t enough consistency in my day to day life that makes me confident I could work the same hours, five days in a row, every week. I think back to the time a few months ago when I felt really good and was considering returning to work. Can you imagine what would have happened if rather than starting my own company I had gone to work for an employer? I would have been probably two months into my job when my hip bust. I would have been unable to work because of the pain (and I couldn’t drive anyway). In reality, I was only able to work through ‘hip gate’ due to the fact I didn’t need to leave the house (the stairs were my only obstacle). Finding out that I needed surgery would have meant another couple of months off if I was in employment. The horror of explaining this to an employer would have been too much, especially so soon into my employment.

Those of you who aren’t sufferers yourself just consider this amount of stress for a moment. Could you handle having to worry, not only about your condition constantly, but how it could affect your job and ultimately your financial situation? Could you handle the stress of having to call in sick on several occasions and not feel guilty about it?

At my last job, the stress and guilt of having to constantly explain why I couldn’t make it in to work made things worse. It made my health a lot worse actually. Stress makes RA worse, we know this, but the stress of just not knowing if tomorrow will be another sick day is and was too much. Added to that, some employers are not great with chronic conditions. They may be well within their rights to not pay you if you are sick and unable to work. What do you do in this position? You physically cannot go into work but if you don’t, you won’t get paid.  You have bills and rent to pay... what do you do? Relying on others to help, or the government to hand you out some pocket money seem like the only options. But then consider the stress of constantly having to ask for help. Wouldn’t that get on top of you too? These are actually rhetorical questions on my part because the answer is yes. Yes all of the above will continue to spin out of control and bring you down until you don’t see a way out.

Many people ask me how I can be so positive in my situation. Think about it. If you had all of the above to contend with on a daily basis, along with the medications, endless doctors and specialist appointments, lack of sleep because of pain, fatigue, nausea, blah, blah... wouldn’t you just have to smile? Wouldn’t you just think... ‘you know what, life is pretty shit right now, but you’ve got to laugh’. Luck is not always on everyone’s side, but I believe a little luck will come everyone’s way eventually. Now if my little bit of luck would just hurry along...

Personality Failure

I’d like to say that this week I have been uplifted and experienced a huge change in mood, however, it seems more likely I am having a personality failure. I know the pressure of quitting smoking isn’t helping (by the way very proud of myself as I am on day 11 now without a cigarette!) but I can’t seem to snap myself out of this personality coma. I have felt doom and gloom for no real reason. It made me think of everyone out there who is suffering, do we all have several personality failures when we experience flare ups? It’s no surprise that being in pain affects your mood.

I hate it when pain strikes and I don’t just mean a headache. I mean full on, chronic aching of joints and muscles to the point where you just want to cry. The problem is when you’re in this pain ‘bubble’ as I call it, it’s hard to carry on as normal. Those who are closest to you bear the brunt and know that something isn’t right, I believe I have treated my closest family members quite badly this week because of my constant mood and inability to smile on cue. I hate being this way and I kick myself when my mum or sister leaves after I’ve spent an hour moaning or snapping at them over coffee. I just can’t seem to want to engage in conversation or feel happy about anything. All I can concentrate on is the aches and pains. I can cope with it better sometimes, but this week it’s like hitting a brick wall.

I feel stressed. I feel incredibly worn out, and I don’t know why because it’s not like I have had much to do besides work these past few weeks. The six week recovery period following my hip replacement is up tomorrow. I can’t decide whether it’s gone incredibly slow or incredibly fast? I feel almost guilty that the time is up because I haven’t been as productive as id liked or really taken the time to recover properly. I know that’s contradictory because you’re not supposed to be productive when resting. I feel like I have to push myself back into reality now and really focus on work this month (which I am happy to do) although I am a little afraid of actually going back to work. Stupid huh seem as though I work for myself? Plus, I have been working from home anyway since the op so it’s not going to be much different. I think it is the actual going somewhere and being away from home that I am afraid of. Here I am comfortable and safe and I can slip off for a lie down when needed. I can’t do that when I am not at home.

I think anyone who has RA deals with these battles of confinement and going back to reality on frequent occasions. You spend a few weeks cooped up in your home when experiencing a flare up and then have to prepare yourself to face normality again. By the time you get used to routine again, no doubt another flare up comes along. It’s a vicious cycle. I now want to concentrate on getting the balance right... which is going to be harder than it sounds. It’s funny, every time I think I have overcome challenges of living with RA it turns out not much has changed and I am still struggling anyway. My anger and fear gets in the way of living a normal life in conjunction with the pain and fatigue. Tough combination. But if I can replace the fear of going back out into the world again and deal with my anger of being shut away for so long, maybe the pain and fatigue won’t be so bad anyway?