In complicated pain conditions there are two kinds of pain: bearable and unbearable. Most of the time it is the latter. This can be incredibly hard for loved one to comprehend. There are no breaks or moments of respite in CRPS. None. The pain is constant, swiftly making you forget what pain-free or comfortable ever felt like.
Fibromyalgia can also be vicious, though it tends to ebb and flow a little more than the constant burning and freezing of CRPS, it can be exhausting, the brain fog embarrassing and frustrating too, but no matter which pain condition you or your loved-one lives with, the pain is real and struggles are very real too.
Though without direct experience it may be too tricky to understand, as with everything we haven’t experiences ourselves, it is vital (sadly not commonplace), that loved-ones do not add to burdens of a live unlived — and a body that betrays with pain and limitations — by believing their loved-one’s pain.
Most people will have experienced the pain of injury or acute illness, but the condition will have settled and the pain disappears. Chronic pain is different as it does not go away, creating a feeling of frustration and helplessness.
Chronic pain doesn’t just affect the sufferer, it makes dramatic changes for those around them too. Family, friends and work colleagues may react in unexpected ways, sometimes kindly, other times with hurtful disbelief but every relationship is altered one way or another. Especially for loved ones who are suddenly caregivers.
Fighting pain takes everything you have in you to just get through the day and sometime, the pain patient may be struggling so hard just to cope with the constant onslaught of pain that they do not see the stress they are inflicting on others. Of course this is exacerbated when those they love do not learn about chronic pain and their specific illness, which only serves to make the ain experience even worse.
This is when learning how to be both a carer and taking care of yourself too, while helping the patient, is most important and support is needed. No one wants to be a burden on anyone else. No one wants to be irritable all the time. Try to put yourself in their place. If they could change things they certainly would.
Helping them help themselves while maintaining your own life balance is the key. In this section we will look at not only how you can help but also coping stratagies for carers and those close to the chronic pain sufferer.
At present medical science does not have any clear answers for chronic pain and many different treatments may be trialled before a positive result is found. Often the cause of chronic pain cannot be found using current medical technology and this adds to the frustrations and leads to the question whether the pain is real or not.
Questioning the pain is particularly hurtful to the person who is in pain and can damage the relationship between carer and sufferer.
Caring for someone who lives with severe chronic pain can prove difficult and frustrating and the pain can be frightening, not only for the person experiencing it, but also for people close to them.
Although I created this website to help as many in pain as princessly possible, having CRPS and fibromyalgia myself naturally means those are the two pain conditions I can speak about with the insight of first-hand experience but I hope that the offerings found herein can help everyone who lives with chronic pain.
When I started The Princess in the Tower a father contacted me who was desperate to find anything, anything at all that might stop his son from screaming because of the constant intensity of CRPS. I wanted to say that it gets better but perhaps it is only we who get better at dealing with it.
We don’t wish to spend our lives squirming or screaming and somehow, though we never truly are used to it, we quieten. Our dreams too lower their voices as we resign ourselves to never again knowing what it is to feel comfortable or pain-free.
Just as the sufferer of chronic pain has to learn to live with their situation, so too does their carer, and strategies need to be in place to create the best quality of life under the circumstances.
These strategies will be different for each individual or circumstance but there are basic rules that can help:
- When a patient goes for medical consultations and physical therapies, ask if you may go with them and learn what is being done and what results can be expected.
- Learn all you can about the medicines the person you are caring for is taking so that you can be aware of side effects and what the medicines are for so that you can help them manage wisely. Keep a list of medicines to take to the doctor, clinic or hospital.
- Learn all you can about ‘chronic pain’ so that you have a greater understanding of what the chronic pain sufferer is going through. This is vital for the welfare of both you and the person in pain.
- Learn managing strategies from pain management clinics, books, support groups and links such as this web site (and our facebook page).
- Learn to balance what you do for your partner and what they need to do for themselves (see below for help in balancing your care responsibilities).
- Encourage the patient to be as physically and mentally active as is possible, always being aware of their limits.
- Say what you are thinking, don’t let gestures speak for you.
- Show appreciation when the patient does something for themselves or takes the initiative, this is good for their self-esteem.
- Accept that feelings of anger and guilt are normal under these circumstances and try to not to mirror any of your partner’s negative emotions. It would be better to direct them to this website so they can learn how to help themselves, see the Pain Management page for more information on helping negative thinking.
- Look for fun activities that you both can do but always remember to look after yourself too.
- Take ‘time-out’ for yourself, caring for someone with chronic pain can be exhausting and you will need times to recharge.
Care For Carers
UK carers can call Carers Direct on 0808 802 0202 Free, confidential information and advice for carers. Lines are open 9am to 8pm Monday to Friday (except bank holidays), 11am to 4pm at weekends. Calls are free from UK landlines and mobiles or you can request a free call back. You can also ask for a call back in one of more than 170 languages including:
Scotland has a fantastic carers’ website; for the right info on how to get a helping hand for yourself or someone you care for, call or go online: 08456 001 001www.careinfoscotland.co.uk Lines open Mon-Fri, 10am-8pm and Sat, 10am-4pm
Carers Australia puts you in touch with other carers as well as the National Carer Counselling Program: Free call 1800 242 636 www.carersaustralia.com.au