I had an appointment today the Consultant told me that I’ve got a respiratory disease that I need treatment for, that sometimes there are no answers to the illnesses people get. They aren’t ever completely understood.
You see I’ve been so not satisfied with several diagnosis from different doctors and the lack of co-ordinated care it’s been really difficult to accept what is being said when you know that all the facts they have/know about you aren’t accurate or they are incomplete.
If it weren’t for the fact that my children are having symptoms of things I just wouldn’t push it any further.
I do agree with what he was saying and it’s true that I have at times drove myself mad looking for a cure ,who in their right mind wouldn’t want to get better.
I no longer look for a cure ,I look for an understanding of what’s going on, pain control and support not just for myself but for my family and other families in our situation.
When you know that someone has only looked at half the story would you trust them to be able to recite it better than someone has studied the whole book ?
I really liked the Consultant I saw today . He gave an analogy ….
What you have got if you compare it to a teaspoon of salt on a spoon ,it can’t be stomached! But , if you put the salt into a pool of water it becomes less noticeable.
I like that and I get what he was saying to fill my life with pleasurable things but also you need money ,mobility equipment, pain control and support to do all that for a start.
He is so right though. It’s definitely the key to dealing with any illness.
I think one of the hardest things you and your family have to cope with is the families mental health. If you are mentally strong dealing with the physical stuff becomes a doddle.
So how do we care for a families mental health?
There are services that support members of the family individually which are funded by the local councils. These are run by such charities as carers trust, n-vision and Barnardos in my area . The problem being you don’t always get support depending on how much your council is paying the charity for that area i believe?! It still hasn’t been made clear to me why a charity can do lots for young carers in one area and hardly nothing in another but …….
There is also the wellbeing service which is for 0 to 19 year olds and then there is an adult one too. We struggled to find this service ! I found it out of desperation for one of my children who badly needed support but couldn’t get it from any other service. The GP practice didn’t even know about the wellbeing service either which is quite worrying considering it’s supposed to be the go to place for family support.
Also connected to this service is an adult wellbeing. The person I saw although very nice not reliable. Never got back to me.
All along I have been asking for family support. Either nobody gets it or it’s not possible.
For example should we be fixated on a childhood being hard due to a parent being ill and them becoming young carers just in a physical sense?
What about a childhood being hard because mum or dad can’t take Jonny or Suzy out ?
What about a childhood being hard due to a child some days seeing mum or dad crying in pain.
Or stressed because they don’t know how they are going to pay the mortgage.
Being told they can’t go to their friends party because nobody can take them.
Ok they don’t make meals but they put my socks on ,let the dogs in all the little things that you don’t even think of really.
When there’s sickness in the home the potential for unhappiness is high. Family dynamics change.
The solution looking from the inside screaming to get out so please hear me ….
Family activities. Re establishing the roles within the family. Building self confidence in the person that is sick to enable them to do as much as they can for themselves. This will also keep motivating them to keep trying to improve their skills. In turn this will help them to feel self fulfilled =happier. Takes the pressures of family as person has learnt more skills and can do more for themselves.
Team building learning to do things together problem solve communicate but not take over from each other to avoid disputes.
There’s different places that offer residential courses and can provide activities for able and less abled bodied people or children to do and have now started adding family residential breaks.
I’m not convinced that anyone sees what a big impact it would have if this was offered more frequently as a family therapy instead of some of the unreliable services that are there at present .
Of course it would also help to have adequate equipment so that disabled people can get out with their families too.