While our minds and lives are being shaped by COVID19 it’s easy to forget the other important aspects of our health. It goes without saying good health is one of the most important things in life and for those of us with a rare condition it’s even more important we know and listen to our bodies.
The one thing we all have control over (usually!) is food and I’ve always believed in the saying ‘you are what you eat’. I don’t believe in faddy or restrictive diets because they are hard to maintain and nutritionally poor. Food is one of life’s pleasures and the more variety you eat, the better it is. There is no such thing as a ‘bad’ food because in moderation everything has a value. Of course, if you have an allergy or intolerance you need to take special dietary advice. As OI women, we need to build our bodies and immune system up from an early age to keep as healthy as we can throughout the different stages of OI life. Keeping iron levels up is very important, as anaemia is quite common in women, particularly for those with heavy menstruation. Try and include iron rich foods in your diet. Portion control can be difficult especially if you are small and not able to exercise. Putting on weight can be problematic and not easy to lose. On the reverse side, some may find it difficult to maintain a healthy weight either due to lack of appetite or the lack of stomach area. I find it increasingly difficult to eat average portions as my severe kyphosis and scoliosis act as a natural ‘gastric band’. I therefore try to eat little and often to avoid that bloated feeling. It’s all about adjusting what is right for you without compromising your nutritional needs. Maintaining a good weight is not only beneficial to your bones but health in general.
Exercise and Wellbeing
Although exercise with OI can be difficult we can all exercise to a certain degree. When I was laid in a hospital bed with two broken femurs I clearly remember the Nurses passing my bed saying, ‘Keep wiggling those toes!’ I guess any movement is better than none!
Exercise not only benefits our bodies but general wellbeing as well. I recently ‘googled’ wheelchair exercises and it’s pleasing to see how many YouTube videos there are. I particularly liked one for Tetraplegics, where four people in wheelchairs exercise to music. It’s not too strenuous and I find it a fun ten-minute workout. It makes it even more enjoyable when you feel part of a team.
However restricted your ability to move is, it’s very important to keep your lungs clear. Again, there are good airway clearance programmes online, but one of the easiest ways to exercise your lungs is singing, humming or whistling. Anything that gets the lungs working. If you can’t join a choir or singing group, just sing along to the radio. It’s very uplifting!
Smear Tests and Mammograms
There are a number of tests, as women, we will be called up for. The first one being the smear or pap test. This can be quite a worrying procedure when you have a disability. This is where you need a good professional that will put you at ease and be prepared to accommodate your particular needs. Sometimes just getting on to the examination couch can be a struggle, so you need one that adjusts in height and assistance to get on and off if needed. The usual positioning for the test may not be possible if you have pain, cannot lie down or bend your knees up. You will have to work out the best position that allows for an accurate test but also done with your safety in mind. I had one nurse who struggled with my smear and then angrily snapped, ‘in future get a doctor to do it!’ I left feeling it was my fault I didn’t conform to the ‘normal’ body shape. However, the next time I went I had a lovely doctor that understood my need and we ended up with me on my side and her stretched across the bed. Not conventional, but it got the test done! It’s all about communication and being treated with respect. Sometimes a test is not possible due to severe scoliosis or the cervix being tilted. If this is the case an abdominal ultrasound or MRI can be considered. Remember we may be challenging but there are options, so don’t be put off.
Other than self-checking, Mammograms are also really important, and the radiographer will be used to making adjustments for disabled people. The equipment is quite versatile and can be lowered in height, but OI can post additional problems. You have to be able to press your chest very close to the metal plate and if you are pigeon-chested, as I am, the risk of a rib fracture has to be considered. In my case because I have quite fragile ribs it was considered too high a risk, so I am offered an ultrasound instead. This easier procedure still allows the specialist to check for abnormalities.
Both these tests are important, so if you get a letter of invitation it’s an opportunity to discuss with your health provider any concerns you may have prior to the appointment.