You are lovely lovely people. Thank you so much for replying. I will try and answer some of your questions.
I take Pregabalin for the pain. I can’t tolerate the other drugs I have tried.
I only see the Neuro once a year. He has said that he can’t go anything for me so it is a case of just seeeing him to have a catch up really. I changed Neuro and this was the first time I had seebn him. He was recommended as very understanding but I didn’t really see that. I had spent ages writing up my history so that I could refer to my notes. Thought that would help him too,. Did not ask one question about my history. Other to say that he wasn’t sure that my former Neuro was right in saying I had PPMS. I then had to explain, no relapses, MRI (numerous) several infusions of steriods with no effect. All this made them think it was PPMS not SPMS. He shut up cos one dr won’t go against another eh? Nevertheless he was extremely unhelpful, did not examine me. The appt I had waited nearly a year for was over in 10 mins. I did not expect miracles but a working relationship I would have settled with! We do not have MS Nurses here.
My family. I get what you are saying. I have to keep banging down the barriers. Believe me. I have tried for years but to no avail. My family just does not talk about the “bad things in life”. Let’s keep it airy fairy and in never never land. That way we do not have to change our behaviour. I am the youngest child and that is where I stay. No matter what I try and do. The only person I would have had a chance to talk to about this was my Dad. Unfortunately he is dead. My diagnosis came after his death so I was never able to “chew the cud” with him about it. Honestly there is no changing my family. When you talk to them they are just waiting for you to finish so they can talk about themselves. I don’t mean that to sound harsh but that is how they are. If I mention anything about the MS, silence. Then they continue talking about themselves and their problems.
I was having physio although I have to get a new course of treatments sorted out as they have finished.
I was just chatting with my Mum on the phone. I phone every day to see how she is. We were having a nice conversation until she started saying that we three kids want her money and don’t want her around anymore. I tried explaining that we are trying to put things in place to help her. To help her stay in her own home, because that is what she wants. She is at the point where she is a danger living on her own. I have just spent three weeks with her (we live far apart) trying to sort this all out with the help of my siblings. They all live closer and visit her on a weekly basis. Because of this they do not stay over with her. I was there for 3 weeks. I did everything for her. Meals. Shopping. Housework. This is part of the reason I am having a meltdown now, did too much. Anyway. I tried, very politely, to explain, again, what we did and why. To help her. Again, we are after her money. So I spoke to her in a way I have never done before. Still politely and with a low voice. But. How dare she think that of us. We do everything to help her. I won’t have that help when I am her age. Anyway she got so angry and was shouting at me. She put the phone down on me and I am sitting here in tears, typing this out! I am so upset.
Why does she have to be so mean to me? She isn’t like this with others, or not so bad. They are the blue eyes. She said on my wedding day that I have caused her more problems than all three of us put together. Said that in front of all the guests. That gives you an idea of what she can be like.
There isn’t an MS support group in this area. I have looked but nothing. That is why it is so good to come on here and talk.
I have a little transfer wheelchair that I have used once or twice so I don’t think I am looking on it as negative. I thought it would be a huge leap for the old mind, but in fact it wasn’t. I am looking a a Travel Scoot or something similar as I really can’t go on like this.
Anthony, you are perceptive. I am lonely. Very lonely. And I am a social person. My job used to involve seeing up to 400 or 500 people a day. Now I don’t see anyone. Hubby says to go out and about. He doesn’t understand that I am struggling just to cope at the moment. He would like to be more sociable. I try and encourage him to go out without me but he won’t. So he suffers as well.
I am depressed I know that. Have suffered for years and I take medication. That is a big battle to overcome that. But I think everyone who knows me would not suspect that I am depressed. I used toi be in amateur dramatics and I think I am still a good actress at covering it all up!.
My family rely on me Anthony. It is too difficult to explain any other way. My hubby is not in denial. It is just that he think you have to power on. To keep going. He just doesn’t get it. He too doesn’t like talking about it. He sometimes says that I focus on MS too much!!
Yes at the moment I am very unhappy,lonely, isolated and in pain. I am not looking at the future because I don’t think it looks very pretty at the moment.
I am sorry to go on. I know there are people who are worse than me. I don’t feel sorry for myself. I just feel like putting my head under the covers until it all feels better!! I am sure some of you know that feeling?
Eeeeh Polly - I have always been here but just don’t type too much. I wil try and keep in touch more often eh?
Good Night to you all. I hope it is a beter one for one and all tomorrow. Another day, another dollar eh?
You are the best.