It has been a while since I’ve blogged; my recent time has been taken up with work, a European city break, birthday planning and, let’s face it, a great deal of rest and sleep (needed after those other things!)
I really want to blog more regularly and consistently, but to be honest I am finding it harder and harder at the moment. These days, even small amounts of activity (i.e. baking a cake for my husband’s birthday or going out for a meal) exhausts me; my spoons have reduced in number; either that or the simplest of activities use up more spoons than they used to. Either way, I’m struggling. Just when I think that I can’t have any more MS problems, a new one crops up. My running total so far includes all of the following, with the exception of any problems with my bladder and bowel:
Added to this list for me is Clonus – involuntary, rhythmic muscle contractions in my legs.
Some of my symptoms come and go. For example, my word-finding problems arise when I am particularly stressed or fatigued, but others are there all the time – my fatigue, my dragging left leg, my weak left hand that means that I am unable to easily complete the simplest of tasks, such as cooking or typing.
This week, I have had three falls in three days and I am scared; how many more falls am I going to have before I break something? Is it time to be permanently in a wheelchair? Maybe this should be another ‘common’ MS symptom… being scared. I would harbour a guess that, as time goes on, 100% of all MSers suffer from this symptom. Scared of what is happening to themselves, scared of the effect that it has on their relationships, scared of the future, scared that their children will also get MS… just plain scared. I am tired of feeling scared. I wish that I could go back to the time that I wasn’t scared (in denial?)… those carefree days when I had no MS symptoms, despite a long-standing diagnosis. How silly of me to think that I would be able to live my life free of the MS I was diagnosed with when I was 15 years old. How stupid of me to believe that having ‘benign’ MS for 20 years meant that it would stay unseen, unheard, invisible in its truest sense. Why didn’t I read up on how to reduce my chances of having future problems (for example by following OMS, which has been proved to have a positive impact on the long term outcomes of MS).
Feeling regretful; maybe I could have reduced my chances of suffering this much
Grief; for the person that once was
Feeling hopeless; nothing can be done
So often, the medical symptoms are talked about; this is certainly the case when I see my neurologist and GP. But what about all the ‘hidden’ symptoms, the emotional symptoms that accompany chronic illnesses and/or a failing body? Having a chronic illness is like a bereavement; as well as the above, you may go through some or all of the following symptoms in varying degrees: denial, anger, bargaining, depression and acceptance (see this well known model of grief). I know that I certainly flow in and out of all the stages, my feelings vary day by day.
I am committed to the OMS lifestyle, though I have wobbled; at times it seems like I have left it too late to make a difference. But I am also not fully near acceptance; and I guess this in some way encourages me to continue with OMS.
My husband said something to me the other day:
“You’re a very determined lady…some may say stubborn”
This was whilst I was dragging my heavy legs around Bruges, refusing the use of a wheelchair as it would have meant that some sights were not accessible to me. But if being stubborn means that I continue trying to help myself, despite feeling worse and worse, then I am going to stick with it, for the time being at least. I do need to address my feelings and emotions a bit more. I spend time stretching out my aching limbs, but my mental health sometimes gets neglected; perhaps it’s time to refocus on the meditation and maybe have a discussion with my GP about other potential things to help. I recently chatted to a MSer who lives in Amsterdam via Twitter (find me @TrippingTreacle), who has regular and unlimited talking therapy as part of her treatment – along with acupuncture, physio and seeing a chiropractor – and this is the standard level of care through a small insurance payment! She raved about it and said that she felt ‘really well’, despite being at the same level of disability as me. Maybe all people living with chronic illness need to be given the option to treat their symptoms, mental and physical, in a holistic manner. If it works in other countries, why not here?
What things have you tried to help your ‘hidden’ emotional symptoms?