How Still’s has affected my life – the answer suprised me!

Lifestyle effects of AOSD/CFS

I visited my specialist last week and he asked me how Still’s affected me, focussing on issues like could I dress myself, cook etc.  I am fortunate that Steroids seems to keep the major inflammatory affects of Stills reasonably under control so I am not completely house bound, when I don’t feel too good I just don’t do certain things, or get one of my 4 girls or my wife to help out. 

After I had left though I got to thinking how I have modified my life to work around Still’s and I realised what a major effect it has had, it’s just that I have adjusted in such a way that it does not seem that I have given too much up overall. In fact taken as a whole, I think I am happier post Still’s, but that is probably as much to do with my positive outlook on life as anything else.  These are some of the major changes:

I cannot do all sorts of things I used to do:

• No DIY
• No climbing
• No weight training
• No hiking
• No heavy lifting
• No stressful projects
• No vacuum cleaning
• No bread making

2.      I sometimes get depressed and suffer from anxiety:

• I almost never got depressed before Stills, maybe 2 down days a year. Now I probably have four or five of real down days a month.  This normally happens when I have had a few good days and then relapse.  I try to train myself to expect the good days not to last, but it is difficult not to get my hopes up. The good bad cycles have happened about 10 times now in the last 9 months so I am getting better at coping with it.
• Anxiety is something new though,  I get anxious over lots of silly things and so try to avoid situations with too much uncertainty

2.      I need to avoid trauma or infection:

• I have noticed that my symptoms flare with every infection from colds to tonsillitis.  My worst flares (where I have ended up in hospital) have all been triggered by Strep throat.
• I have also noticed that even trivial trauma, for example, a tooth extraction, injection, or bad cut also seem to trigger a mini flare.  This tends to make me pretty cautious and I suspect that strenuous exercise, (if I had the energy to do it) would also cause a mini flare

3.      I don’t travel much:

• I never drive more than 30-40 minutes away from home; I get these very localised very painful muscle inflammations that mean I am unable to move my arm, jaw, knee, foot etc.  It general takes about an hour for this to happen so I have time to get home.
• Sometimes though when I get these localised flares I need to be rescued, so I am often ringing my wife to ask her to come and get me from wherever I am.  Because of this, I don’t ever go very far from home.
• My wife or friends drive me long distances, I hardly ever sit in a car for more than 30 minutes because I get so stiff and achy.

4.      I get very tired:

• I used to be very energetic and driven.  I would often work for 12 hours at a stretch and hated to start a job that I could not get finished or at least make real progress on in 24 hours
• I have had to adjust in a major way here.  My expectations are set much lower.  A task that is going to takes 3-4 hours needs a lot of preparation, I rest the day before, make sure I can have breaks in between etc.

4.      I need help and supervision:

• I often find that I am unstable, or the pain is so intense that a joint gives way when I put weight on it.  When this happens, I am housebound and navigating the house is a real trial
• During these periods I am often restricted in daily activities like dressing and bathing but my wife is a usually around and can help as can the kids.
• Due to the poor concentration, I need to be careful, sometimes when not thinking straight I will need someone to drive me, cook for me and check my meds.

5.      I struggle to concentrate:

• It’s no longer possible for me to work for hours at a time.  Most of the time I do well to concentrate for an hour or two and on a bad day that can be reduced to 20 minutes.  I spread my working day out with lots of breaks.
• I do try to do very gentle exercise like slow walking, cycling and swimming.  When I swim, the hot Sauna and Jacuzzi help a lot as they allow me to have breaks whilst I try and build up my stamina.  The exercise helps a lot with concentration.  After 1/4 an hour of exercise, I am often able to concentrate for an hour maybe even 2 on a good day.   On many days, I struggle to exercise though.

6.      I am unable to plan to do anything:

• Within 24 hours I can go from a reasonably normal state to almost crippled, even with the daily steroids, (and Methotrexate).
• As an example on a really good day I can walk 2 miles and swim 40 lengths, within 2 days 8 lengths is a major achievement and a 50 metre walk is a triumph
• We tend to leave holidays until the last minute, even then, sometimes I have to stay home and let my wife and kids go alone, but often we manage it so that I am able to go as well and I always feel better for the change.

7.      I spend more money and earn less money:

• Frustration used to be a natural part of life.  Now I avoid it like the plague, I have enough to deal with!  If something annoys me, or I want something that my company won’t provide, or I need something fixing round the house and I don’t have the energy or strength to fix it (most things) I just spend the money now.  I used to be much more of a saver.
• I have bought more holidays from my company, (I get paid less but get more holiday), which gives me more opportunity for a thorough rest.
• I only manage to work about 25-30 hours a week, so I will soon only get paid (via my insurance company hopefully) 75% of the hours I am unable to work.
• I spend more on experience and less on things.  I am not sure how my experience with Still’s will pan out in the long term so whilst I am still somewhat mobile as a family we are spending a lot more on experiencing things than accumulating things.  We all feel better for it!

8.      I have become much more relaxed and positive:

• I live with daily uncertainty, pain and fatigue.  I have had to learn that I can still enjoy life regardless of these external elements that often fight against me.
• I have learned that most people when they understand how Still’s affects you help you to live with the variability and accommodate you.

9.      I have learnt more discipline:

• My days used to be governed by meetings, to-do list and diary.  I hardly had to think about what to do. 
• Now I work on longer-term research and my health depends on forcing myself to do things, like exercise, that I often don’t feel like doing and working when I feel like slumping in the chair and watching TV or sleeping.  That has taken a lot of discipline but I have had a lot of support from work and family

10.  I do a lot more housework:

• Now that I work at home, I have included a lot of housework into my routine as it provides a good way to take a break and with 4 kids gives my wife more time to pursue some of her interests at last.
• I really like washing up, it’s great for the hands
• I wash and put away all of the clothes, and with 4 girls that’s a lot of washing!  Although I cheat because I can’t put things on the line so I use a tumble drier for everything!

11.  I have much more time for the kids:

• I am always around and able to take a much more active role during the week than I was able to before.  Previously I was a very attentive weekend Dad, but now I might be a bit slow, but I am a 7-day Dad again.

12.  I take time for myself:

• I realise that looking after myself is a high priority, so making sure I get plenty of fun, rest, good food, lots of exercise and the minimum of stress are all top of the agenda

13.  I have learned to say no:

• I used to accumulate work at an alarming rate.  I don’t do that now, a friend of mine, in a similar situation, said recently “don’t do anything you are not paid to do”, sounds simple but prior to Stills working a 60 hours week was common, now 37 hours is impossible so I work hard when I am able to, but when my health is at risk, I don’t find it hard to say no.  This also applies at home my family have been great in understanding that there are lots of things I can do but often I need to say no on particular days, and there are just some things that they have to do with Mum.