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Ask The Nurse: Tips for maintaining your sense of self

In this month’s blog, we share our top tips to help you maintain your sense of self and live well with myeloma.

Ask The Nurse // 3rd June 2021

A myeloma diagnosis is life-changing and can affect you in several ways. Some people find it easier to focus on the practicalities and physical effects of myeloma – tests, hospital appointments, treatments, side effects and symptoms – rather than the personal and emotional impact. As a result, patients sometimes find that they have lost their sense of self and find it challenging to be a person rather than a patient.

In this month’s blog, we share our top tips to help you maintain your sense of self and live well with myeloma.

1. Acknowledge your feelings

There is no right or wrong way to feel whether you are at diagnosis, remission, or relapse. It is OK to be sad, angry or worried, even if you have had myeloma for a long time. It is also OK to feel happy or excited when other people might not be. It’s also perfectly normal to have the odd ‘off day’ where you feel less than positive. Maintaining unrealistic positivity can be exhausting and isn’t healthy.

No matter what your feelings, it is important to acknowledge and embrace them. You can do this by talking to someone – your partner, your friends and family or other patients. You might find that talking about your feelings not only helps you but also helps those around you who are also finding things difficult.

You could also write your feelings down in a diary or blog. This can help you work things through and help you to notice not just your challenges but your successes and achievements too. It can also help you keep track of your feelings over time.

If you notice that you are feeling anxious or depressed most of the time, you might want to talk to a professional. Your GP or healthcare team can help you with this.
Sometimes, talking with someone not directly involved can allow you to express yourself in a more open way. Many patients find support groups, online forums, or helplines a great resource for this.

2. Take control of the changes in your life where you can

It is difficult but try to focus on the things you can control or change and work towards accepting the things you can’t. Try not to worry too much about possibilities and what-ifs and focus on the facts and what you know to be true. You can control how informed you are, your daily activities, what you wear, what you eat.

Lists, diaries or planners can also help you feel more in control. They can help you know where you need to be and when, the questions you want to ask, things you want to do or help you separate the facts from the fears.

3. Find what makes you feel good

Doing things you enjoy can make a big difference to your wellbeing.

Although there may be things that you stop doing because of your myeloma, this can give you the time to explore new opportunities or take on a new hobby.

Trying new things can also give you a sense of achievement and help rebuild your self-confidence. This could be writing, baking, learning a new language or spending time in the garden. Most people have a list of things they wish they had time for, so pick one and see if it is fun.

For some patients, feeling good means looking good. Organisations such as ‘Look Good Feel Better’ offer a free service for cancer patients to teach them make-up, styling or grooming techniques to help them feel better and boost confidence and self-esteem.

4. Set your own pace

Your motivation and ability may change due to your myeloma or your treatments. Therefore, you may need to slow down, set a new pace for yourself, or do things in a different way. You could set a small goal every day or setting a long-term aspiration you work towards.

Try not to compare yourself to others or rush to get back to where you were before your diagnosis. Take your time and celebrate all your achievements – whether it is meeting someone new or going for a walk.

5. Nurture your relationships

Every relationship is unique, so the impact of myeloma will vary between couples, families, friends and work colleagues. For most people, however, dealing with a myeloma diagnosis can cause extra strain and change the dynamic of your relationships. This is especially true when you need extra support or care, for example when you have severe symptoms or are on treatment.

Making the time to have fun or quality time with your loved ones can help things feel more normal. This can be watching a film together, playing a board game or telling stories.

If you decide to take up a new hobby you can also get your partner or family involved. This might make your relationships stronger than they were before.

For more information about living with the emotional impact of myeloma read our “Infopack for living well with myeloma” or watch our “Psychological and mental wellbeing webinar”.

Our Myeloma Information Specialists are here to answer your questions, listen to you and to offer some reassurance, support and advice if you need it. If you have any question or concerns you can get in touch by calling the Myeloma Infoline (0800 980 3332, UK or 1800 937 773, Ireland).

Best Wishes
The Myeloma Information Specialists