"Be nice to yourself and take the time to get used to your new life"
News of a chronic diagnosis can create a lot of thoughts and reflections. Will it affect my life? What should I do to feel better? Elsa spoke to assistant university nurse Marie-Louise Karlsson, of the Rheumatological Department at Stockholm’s Karolinska Hospital.
What is common to chronic diagnoses is that life tends to be affected over in periods. We are all different, and how we react to and manage a chronic diagnosis is truly individual. It is important to get to know one's new situation and find practical solutions and approaches.
Having just received a diagnostic message can cause worry and lead to many questions. Marie-Louise Karlsson works as an assistant university nurse at the rheumatology department at Karolinska Hospital. She meets patients who have just been diagnosed every day. Elsa asked her the questions a newly diagnosed person may have.
I just got my diagnosis. What do I do now?
Once you have just received your diagnosis, it is important that you do what feels good to you. Please be nice to yourself! Try to take it easy and give yourself time to get used to having a chronic diagnosis. Some people need more time and want to discuss with us health care professionals or relatives, while for others it’s best to continue just as usual. It is important that you do what feels right for you.
What can I do to feel better?
To feel better, there are things you can do yourself. It is important to try and get started and exercise if you do not already. Exercise can be so much more than gym and group training; it could be dancing or walking, for example. Do what you feel you want to do right now! Any moving is good for rheumatic disease.
Another important part is to try to lower the bar for all your needs. If you are tired, remember to do the fun things that make you feel good and give you energy, not just the things you have to do. So, what gives you energy? Do you need to schedule some time for recovery during the day? How are you sleeping? If sleep is bad, is it because of pain or is something else bothering you? Another important thing is to dare to ask for help.
How long does it take before the medicine works?
It takes different times for different drugs to start working properly. The traditional anti-rheumatic drugs, DMARD, take effect only after at least four weeks. So they are often combined with something that works faster. It is good to ask your healthcare provider about your particular drugs.
What should I expect from a drug treatment?
What you should expect from a drug treatment is to get better. The goal is that our patients should feel as good as possible and preferably be in remission, which means the disease is under control and is not causing many symptoms. It can be difficult at first to find the right medicine to attack the disease in someone, so it may take some time to find just the right treatment.
Fatigue is a symptom that can persist even when the disease is under control, and it can be difficult to access with drug treatment. Occupational therapists are good at helping with little tricks which make everyday life easier. Tell your nurse, doctor, physiotherapist or occupational therapist if there is something that is important to you that you cannot do in everyday life or your leisure activities. We’ll try and find ways to help you.
Can I stop my medication when I'm feeling well?
You should not stop taking your medicine even if you feel better. The medicine does not remove the disease: it suppresses the course of the disease and inflammation. When you stop taking the medicine there is a great risk that the disease / inflammation will return. Talk to your doctor if you want to change your medication so you can have a dialogue about it.
Should I stop my medication if I have an infection in my body?
When you have an infection in your body you need to find out what is best for your particular medicine. Some medicines you can continue to take, while with others you should take a break until the infection is gone. If you are unsure what to do, call your nurse.
What is a flare-up?
A flare-up is when the disease becomes more active. That can lead to pain or swelling, and you can also feel extra tired and hungry. The flare-ups can last for different lengths of time. If you feel that it is getting worse and worse or that there is a high level of sickness activity over a period of time, talk to your healthcare team. It may be that you may need to review your treatment or try something else.
I have many questions about my diagnosis. Where can I turn?
If you have questions about your diagnosis, you can always contact your doctor or other healthcare professional. It depends on whether you feel you want to read up or you want to discuss specific questions about your treatment. There is also good information on the net, such as the Reumatikerförbundet, which has both information and a support line that you can call. In the Elsa blog you will also read about things that may be of interest to you. There are also podcasts, such as Reuma pod and information via 1177.
I feel worried about my diagnosis. What can I do?
If you feel anxious about your illness, it is a good idea find out about things from reliable sources. Write down your questions and talk to your doctor or nurse. If that doesn't help, it can be good to talk to a counsellor for help structuring your concerns and finding strategies for managing them. An important part is to try to put how you feel into words. Talking to family or friends can also help.
I do not recognize myself, I can’t do anything and I do not know how to handle my everyday life. What should I do?
If you’re having a tough time, it is important to say so at your next meeting with your healthcare provider. Creating balance in everyday life and having routines like exercising regularly and trying to do things you know usually make you better aout can also help. Think about what be the causes of why you feel the way you do. Could it be fatigue related to the disease? Do you feel depressed? Is there anything else in life that matters to it right now? Do you need help from your rheumatologist or do you need help from primary care? Ask at the next visit or call and they will help you further.
How can I tell my loved ones how I feel?
It can be difficult to know how to express yourself when you talk about your illness. One tip is to show the information you have received from your doctor or nurse or to obtain information from, for example, the Reumatics Association. Read it together and talk about how you experience various symptoms such as pain and fatigue. Depending on how you feel, your partner could come with you for your next doctor's visit.