Wow another month has flown by, it will be christmas before we know it. June has been a very emotional month for us and last week was especially busy, so I am going to incorporate my weekly update with my monthly update as well.
As always I will start of with C, it has been a very hard month with her, and I have struggled a lot more than usual. This month she has been getting progressively worse with her jaw, which has a knock on effect with her ME, and also her breathing has been causing her a lot more problems as well. I have been speaking with her Consultant who is lovely as we had to cancel her appointment as C was just to ill to get there. As C is having major problems with her jaw and eating is my biggest nightmare with her, as her jaw locks all the time, and plus having an ME problem where things taste funny, I am really struggling so she sent me through a great booklet with nutritious drinks to try.
For a while now, I have been trying to get an appointment for C to see a consultant who specialises in ME and is one of the top ones in the country. My friend sees him with her son and he has improved greatly. It has been quite a battle, I asked my GP for a referral to him and then found that he was not taking on any more patients under 18. So I rang to see if we could get a private consultation with him and was told the same. So on Saturday when the post arrived we were over the moon to receive an appointment to see him later this month, and it is not far and so we can drive there.
Last week my Dad went into hospital to have a knee replacement, we did not know if he was going to have just one knee replaced or both, as they were unsure due to his medical history. He had both done, which is great as he does not have to go through this again. Last week I spent looking after C and driving my Mum around and visiting my Dad in hospital, until he rang to say he could come home on Saturday. I am now helping Mum look after him also. He is doing great although in a lot of pain and will take time to heal.
I mentioned previously, about a friend of ours who has terminal brain cancer. Last weekend I was talking to his wife and said we were hoping to go and visit him if that was ok, and was told it needs to be sooner rather than later. So last Monday we went to visit him with some other friends, it was very mixed emotions we had some laughs but the reality was we had all gone to say goodbye.
For those of you who have younger children, and think it will get easier, believe me it gets worse, our eldest who is 22, has caused us so much stress and worry and he has had a hotline constantly to me, and turned up here for a few days. We have always said our door is always open and luckily he acted on it and turned up here. I spent 3 days talking to him and it does look like he has listened.
Our other son dropped some news on Fathers Day that they are going to make us grandparents for the second time in January. So I have put the order in one can have a boy and one can have a girl haha.
I am really struggling emotionally at the moment, with everything my emotions are all over the place and I am finding it harder and harder to put that smile on my face and tell the world I am fine and coping. But I think it is just that it has been a very stressful and emotional month and just a blip.
Hopefully in my July update, it will be a much happier and positive post.
How was your June?
Let me know your happy stories x
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