Setting Realistic Goals

Before you start, if you haven't read Flo's response to my post on Pacing (over at disabledmedic.blogspot.com) do it now - it's great!

Now, back to the point...

One of the things that I've been learning recently is how to set goals for myself.

This is how it used to go:
Jo: I don't do enough exercise. I'm going to go and spend an hour working out at the gym.
Jo goes to the gym, gets dizzy after 5 minutes, goes home and spends the rest of the day in pain and dizzy, trying to sleep.

This, clearly, was not a good way to go about achieving my goal.

It's very easy, when living with a chronic illness, to get discouraged because there are so many things that we can't do. I find myself obsessing about each deterioration and each perceived failure, while overlooking achievements as being too minor to 'count' for anything.

With this in mind, it's even more important to set good goals - realistic goals that lead to success. We might not succeed every time, but the more we do, the more positive we feel about our ability to achieve things.

I use the SMART system when I set goals for myself. This is an acronym that stands for:
- Specific
- Measurable
- Achievable
- Realistic
- Timely

It's important that goals should be specific and measurable - how else can you know if you've succeeded? It's not enough to say "I want to lose weight" - you need to set a measurable figure on your weight loss. This has to be a realistic number. If you're on high-dose steroids, for example, which have weight gain and increased appetite as a common side-effect, you may need to allow yourself more time to achieve your goal, or to set a smaller initial target.

Give yourself a time limit so that you know when to stop and check how much progress you've made. You may need to have more than one target - a long-term target and a short-term target. Aiming to lose 2 lb (1 kg) in a month sounds more manageable than aiming to lose 22 lb (10 kg).

Once I've set my goal, I think about the changes that I need to make in order to achieve my goal. Sticking with the example of losing weight, I might decide to drink water instead of fruit juice, and to eat fresh fruit instead of chocolate. I try not to make changes that I know will make me miserable. If you need chocolate or a glass of wine to get through the week, cutting those out will make you miserable and less likely to succeed. Don't forget to be realistic and honest with yourself. Cutting out chocolate or alcohol on one day a week is a good start!

There might be more than one way to get to your goal, e.g. doing more exercise and eating fewer calories are both ways to lose weight. People get very hung up on exercise (those who genuinely love going to the gym are the exception in my experience), but you don't have to spend an hour on the treadmill. Getting off the bus a couple of stops earlier, taking the stairs instead of the lift, or signing up to a dance class are all ways of fitting more exercise into your everyday routine. A pedometer is a good way of keeping track of how much walking you're doing.

Having set your goal and decided on the changes that you're going to make, decide on a reward for yourself once you've achieved this goal. This could be a small reward (e.g. a magazine, book, flowers or a bubble bath) for short-term achievements and a big reward (e.g. a massage, a new haircut, a new bottle of scent) for bigger achievements.

If you don't achieve your goal in the time you allowed yourself, don't beat yourself up about it. Consider why you didn't succeed and modify your next goal to be more realistic. You may need to make different changes.

Above all, be proud of yourself. Celebrate every success, no matter how small.

As L'Oreal would say, "You're worth it".

Pacing

Spot the mistake in this scenario:

I have a rare good day and take the opportunity to do all the jobs that I have been wanting to do while I've been stuck in bed or on the sofa. This causes pain and fatigue, along with other unwanted symptoms, and I end up back in bed, or even in hospital. While I'm laid-up, I spend my time thinking of all the things that I want to do when I'm 'better' and then push myself past my limits at the first opportunity.

Sound familiar?

I think that many of us with chronic illnesses push our bodies to the limit. This may be a result of frustration at spending so much time unable to do ordinary (or fun!) things, guilt that we can't keep up with friends, the children, the housework, or our jobs, or excitement that we feel well enough to do things. It seems utterly counterintuitive to me to restrict my activities when I feel good as well as when I'm physically unable to do anything.

This is where the theory of pacing comes in. The idea is to break the cycle described above by carefully restricting activities on good days to avoid the 'crash' days. It's hard, but the incentive is there - imagine not having those crash days, or having them only rarely. It wouldn't matter that I didn't get everything done in a single day (or single afternoon) if I knew that there was a reasonable chance that I would be able to function the next day or even the day after.

One way to start is to think about what you can manage on a moderately bad day. Keeping a symptom diary can be helpful for this. If you know how much you can lift, walk, drive or eat on an average/bad day then you can use this as your baseline. Try to restrict yourself to this initially, gradually building up the level of activity according to how much you can tolerate. Remember that mental activity can also be draining - it's not just the physical tasks that take their toll.

Things that can help:

• Taking regular breaks
• Taking regular painkillers or other medications
• Short periods of activity
• Switching between activities (this avoids strain from repeating one thing for too long)
• Prioritising your tasks
• Delegating to others
• Planning to do things at 'good' times of day

It may seem painful to have to give up tasks that you feel you 'should' do, but paying for a cleaner for a couple of hours a week, for example, may free your energy for other, more important, things. If it's a simple choice between having the energy to spend quality time with friends or spending every good day chipping away at a house that never seems clean and then crashing for several days, surely the answer seems obvious?

I have to confess that I'm bad at this. I'm stubborn and I'm proud. I don't like to admit that my body is failing me, but I know that my husband would rather we were able to go out to see a film or to hang out with friends than know that I had done all the housework by myself.

Hiring a cleaner isn't the only way to delegate tasks. Ordering groceries online and getting them delivered has given me back two or even three days each week. Good things to delegate are things that you don't particularly enjoy, that don't benefit from your personal input, or that cause you more symptoms. I'm not suggesting that you absolve yourself of all responsibility and spend your time watching Jeremy Kyle; far from it. People with chronic illness need activity to avoid deconditioning - doing a lot of nothing will reduce your exercise tolerance and may adversely affect conditions such as autonomic dysfunction.

So what do you do?

• Try to keep yourself looking nice: wash your hair if you can (if not, dry shampoo is pretty good) and use scent and a little bit of make-up if they make you feel good. Get your hair cut into a more manageable style if necessary
• Find a wardrobe that works for you. Suits and high heels are great, but loose tops and trousers may be more appropriate if you're not working. Please don't sit around all day in the same pyjamas that you slept in. If nothing else, freshen up and change the PJs
• Try to have at least one thing every day that you feel pleased to have done. It might be a yoga class, craft, writing, speaking to a friend on the telephone or doing the washing up
• Stay in touch with friends and family. They probably won't understand the extent of your illness - few people do, but they're still part of your life story, and they probably care about you more than you realise
• Try to make contact with people who do understand
• Stay as active as you can, working from your baseline
• Eat good food at mealtimes. Try to make meals an event, even if you're alone or struggle with eating. Eating straight out of the packet while lying on the sofa is depressing for anyone.
• Get outside as often as possible, even if it's just for a cup of tea in the garden (perhaps not in this weather) or a walk to a local bookshop
• Don't give up entirely on work - if you can continue your job (even if you need help with rest breaks or flexible hours) that's great. Otherwise, see if there's anything else you can do - part-time, voluntary, self-motivated. 

I'm certainly not an expert, but I'm learning and I'm trying!

Researching a New Diagnosis

I like to consider myself an expert patient. I am familiar with the signs and symptoms of my illness, the medications used to treat it (including those that I don't take) and their interactions and side effects. I know about the non-medical and complementary therapies used to treat my illness, and manage my own treatment plan with support from my GP and specialists.

This is the result of many, many years of accumulated research.

But where should you start with a new diagnosis?

I found myself asking that very question a few years ago, when I received a new diagnosis to go alongside the existing ones.

Receiving the diagnosis was a relief, as I knew that something was very wrong, so it was helpful to have a name for it so that I could start to understand. What I found frightening was that I couldn't answer people's questions about this rare condition, couldn't suggest anything to my GP, and felt totally unfamiliar with the new medications used to treat it.

So where did I start?

Get a general overview of the condition:

www.patient.co.uk contains numerous articles about medical conditions, many of them written by doctors and for doctors. This was my starting point for looking up the primary diagnosis, and later, the other diagnoses that came along with the primary one. Get an understanding of how the illness presents, is diagnosed, is treated, and how things might progress in the future. Learn about how the illness affects the normal functioning of your body (and learn about the normal functioning if you don't already know).

Try to steer clear of websites that promise miracle cures, or that promote particular products. What you need at this early stage is thorough, reliable information, which will provide a foundation for your future expertise. The NHS website, eMedicine, and Wikipedia are all relatively reliable, though you may find some of their articles a little light on detail.


Find out more from a patient perspective:

Look for any societies or charities specifically supporting people with your diagnosis. Read their articles and message boards, ask questions and compare other people's experiences with your own. Think of this as adding colour and texture to the basic understanding that you gained from the first step above.

Medical websites can give facts and figures, but you have an advantage (?!) in that you know what it is like to actually have this condition and live with it. Reading about acid reflux, for example, without ever experiencing it, is like reading about the taste of a peach without ever eating one.

Look for published research:

PubMed was my next port of call, to see what research had been published about my condition. This is a quick step, just to see if there is anything new or on the horizon for your condition. You may not be able to access full text of research papers, but you can always ask your GP or specialist to print off articles for you, or just ask them what they think about a particular piece of research.

Find out more about drug treatments:

Patient information leaflets provided with any prescribed or over-the-counter medication are helpful. Make sure you read them, even if you don't remember everything they say. It's important to know if a new symptom could be a side-effect of medication or an interaction with another medication that you take. The BNF (British National Formulary) has more details about doses, adverse effects and interactions. Your pharmacist will have a copy and might let you borrow or keep an old edition if they have one knocking around. Try to understand what each medication does and why it has been prescribed.

Complementary and lifestyle measures:

This is probably the most difficult topic to research, as results are often anecdotal. Ask questions of other people with your condition, your GP, your therapists and specialists. Talk to complementary therapists (make sure they're registered with a recognised governing body, and get a personal recommendation if possible). Remember that your mind is very important in all of this - relaxation and meditation may be a valuable part of your treatment, along with more physical interventions, such as acupuncture, yoga, diet and exercise, osteopathy, etc. Most of all, use your common sense. Don't stop taking prescribed medications without consulting your GP, or try something that your gut tells you is risky.

Finally:

Try to keep track of your symptoms - what makes them better or worse, what effects (good and bad) you notice from the medication you are prescribed and from any lifestyle changes you make. Take every opportunity you can to learn more about your condition, participating in teaching for medical students or expert patient programmes, if they're offered to you.

This is your life; your medical condition, and you can take charge. You are the only one who can see the whole big picture of your body and how it's affected by various things (illness, food, exercise, medication, etc.), so you have the right to be the boss of your medical team. Use other people's expertise in addition to your own, but don't forget that you are the leader and the core of the team. This is your life, and you have a vested interest in living it to the very best of your ability.


This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J