Sam's Musings

[SAM55]

Oh @SAM55
What a lot to deal with all at once. I'm so sorry things are tough right now and it seems like everywhere you look in another thing to deal with. I have everything crossed your new GP is a good 'un and you are able to build a good relationship quickly so you get the support you need there.
I've just been out for a walk in the beautiful sunshine too and it's a good mood booster. Be kind to yourself lovely, there's a lot for you to juggle x

Thanks Fee. Have cleared the shed out, been to the tip and hoovered the car but absolutely pooped now. Ate 2 Cadbury's Twirls (second time this week) so really on the slippery slope at the moment as they are so addictive... I don't know what is in them that makes them so different to other chocolate???

 

[Penelope]

What n absolute pain. Yes, I always find the letters arrive on a Saturday too. I went in to the doctors and wrote them out a statement of how my condition affects me, because it is so long since I was diagnosed no one there really has a clue - they just keep writing the prescriptions and that's about all. They regularly ask me if I need my medicines any more!!! Yes please! I can hardly get out of bed without them. They have put that statement in my notes, so I hope that will help when it comes to my migration onto PIP. It too a while, but I did get my ESA sorted in the end, and it was such a relief! I hope it goes smoothly for you.
I have missed you posting, but like you find sometimes it is just too much. Always thinking of you.

 

[Want2b3]

@SAM55 after all that hard work you did today 2 Cadbury twirls are allowed! You possibly burned more calories than they are worth. Don't be hard on yourself, think about when pre op how much you would have had to comfort you. We all have days when we still comfort eat. I had a dairy free icecream again tonight, second this week too.
I enjoyed it felt I needed it and now had it not feeling guilty just get back on wagon tomorrow! We can't be perfect on this new path 100% of the time. It is life and we have ups and downs I have the same issue with crisps and now I make sure .i don't have any in the house as have 0% fight to resist them. We all have weaknesses. It is coming up with a way to control the resistance but also still have one in an emergency

Don't worry your new GP will know how you are medically. Thankfully your retired GP knew you so well and will have put it all in notes. I know it sounds very eek as you have not met new GP but it is your medical diagnosed conditions that is what is important and noted. Any of those forms are a bit of a mare. Citizens advice could they help you? Take one thing at a time. Doesn't feel stressed by doing to much as doing everything at once.

treat yourself tomorrow do something nice pamper yourself. You deserve it I don't believe in Mothers Day. I think it is false, you shouldn't need to use one day to show what an amazing job we do as mums! Was in Tescos earlier and I just thought how many children buying flowers today only show it that one day to their mum? It is the more the simplest gestures out of the blue that means more and it doesn't have to be things that are materialistic or worse shop bought with no real thought, a spontaneous shows of love is far more enriching

 

[SAM55]

Saw new GP and she was nice. She is going to speak to my old GP. It isn't just about what is on my records @Want2b3 , it is the knowing you as a person. Also rang advocacy and they are allocating cases tomorrow so should hear soon about an appointment to get help with the forms. The only thing that was keeping me going this past few months with everything that has been going on has been the thought of going to Scotland in a couple of weeks, but may end up having to cancel/postpone to get these bloody forms done in time.

GP was running an hour and a half late so missed hydrotherapy. Did get a nice walk in the sunshine this afternoon and saw a heron.

Cancelled appointment with the Dragon on Wednesday as couldn't face her and the four hours travelling again, and consultant weighed me on Friday and took bloods anyway. According to answerphone she is on holiday this week, so who knows whom I would have seen!

Telephone appointment with sleep clinic on the 5th, but not holding my breath that that will help as they won't be able to see if it is fitting properly. Can't get a face to face until I have had a telephone appointment!

Really finding it difficult to focus on food and think about what I am or am not eating.

 

[FeeBee]

Are you OK @SAM55 that sounds like a lot to juggle. I really hope there is a way to avoid you feeling you need to miss or postpone your trip to Scotland, especially when that's what kept you going. You so deserve a break away x

 

[SAM55]

Are you OK @SAM55 that sounds like a lot to juggle. I really hope there is a way to avoid you feeling you need to miss or postpone your trip to Scotland, especially when that's what kept you going. You so deserve a break away x

Not really Fee as I don't have a lot of faith in the system to support me at the moment as there are so many changes and cutbacks. A lot will depend on how long it takes to get an advocacy appointment. Can't face the forms on my own as they are too emotionally draining. You work hard to see the positive in the pain of getting up in the morning to face another day, and then you have to focus on how bad it all really is. The s*** cup overfloweth.

 

[starryeyed]

Big hugs Sam I hope they manage to sort something for you soon and in time for you to go on your trip as you do deserve it. Take care xx

 

[SAM55]

Big hugs Sam I hope they manage to sort something for you soon and in time for you to go on your trip as you do deserve it. Take care xx

Thanks Starry x

 

[Penelope]

Not really Fee as I don't have a lot of faith in the system to support me at the moment as there are so many changes and cutbacks. A lot will depend on how long it takes to get an advocacy appointment. Can't face the forms on my own as they are too emotionally draining. You work hard to see the positive in the pain of getting up in the morning to face another day, and then you have to focus on how bad it all really is. The s*** cup overfloweth.

Exactly this. I work hard to only focus on the positive, but the whole process involved in claiming benefits means that I have to look closely at the limitations of my life. I find this totally depressing. I will be thinking of you and hoping all goes as well as it can.

 

[SAM55]

Exactly this. I work hard to only focus on the positive, but the whole process involved in claiming benefits means that I have to look closely at the limitations of my life. I find this totally depressing. I will be thinking of you and hoping all goes as well as it can.

Thanks Penny. It means so much to hear from someone who 'gets it'. Slight hiccup today as the advocacy service who I rang yesterday who said they could help me, rang me today to say now they can't. Hopefully I have now found someone else, fingers crossed!

 

[FeeBee]

@SAM55 I feel exactly the same when I have to do my forms. I'm already dreading the next renewal, just trying to sort my mobility pass is bad enough but PIP forms are so negative and dehumanising so I really get it believe me. I don't enjoy discussing my life expectancy at the best of times
I really hope you can find someone who can help you with the forms x

 

[juliep]

I get pip awarded for four years and I would 100% suggest that you go through the CAB to do your application. Make sure someone goes with you for the assessment and be brutally and graphically honest about what your worst day is and what you can or cannot do yourself. Take along a history of tests and medical s, and a report off your doctor listing all your chronic and acute conditions and medications.
If you are claiming mobility then don't go alone as they automatically mark you as being independent and not needing support. The other thing I down was to stop my painkillers for a week beforehand. It was agony but they could see how your conditions affect you usually. Just don't downplay anything no matter how embarrassing- I told the male assessor precisely what having genital ulcers meant when having a flare up of my Behçet's disease. It had him cringing but he would have known otherwise.
Good Luck!

 

[SAM55]

@SAM55 I feel exactly the same when I have to do my forms. I'm already dreading the next renewal, just trying to sort my mobility pass is bad enough but PIP forms are so negative and dehumanising so I really get it believe me. I don't enjoy discussing my life expectancy at the best of times
I really hope you can find someone who can help you with the forms x

I know you do @FeeBee, probably more than lots. It occurred to me after I had responded to Pennie's post that it hadn't been very well worded, and it certainly wasn't meant to be denigrating any of the support you have been giving me, which is as always very much appreciated.

Tomorrow I am going to go under the bed (which isn't easy) to see if I can find the last lot so I can see what I told them 4 years ago, and try and start on a working document a bit at a time, so I have something to show whoever helps me, and my GP when I see her next week. Therapist was being very supportive today to, although hopeless at writing letters when she says she will!

 

[SAM55]

I get pip awarded for four years and I would 100% suggest that you go through the CAB to do your application. Make sure someone goes with you for the assessment and be brutally and graphically honest about what your worst day is and what you can or cannot do yourself. Take along a history of tests and medical s, and a report off your doctor listing all your chronic and acute conditions and medications.
If you are claiming mobility then don't go alone as they automatically mark you as being independent and not needing support. The other thing I down was to stop my painkillers for a week beforehand. It was agony but they could see how your conditions affect you usually. Just don't downplay anything no matter how embarrassing- I told the male assessor precisely what having genital ulcers meant when having a flare up of my Behçet's disease. It had him cringing but he would have known otherwise.
Good Luck!

Thank @juliep . Have been through this three times before plus two appeals which I won, and never complete the form in my own writing or go on my own, and have never found my CAB very helpful as I am in a rural area and it is under resourced. They don't open everyday and they are managed as an outreach. I tried phoning the main office today but spent ages hanging on for an answer as the message said they were experiencing 'high call volumes'. Gave up in the end and tried someone else who I got through to straight away.

Gave up embarrassment long ago as there was a time when I experienced double incontinence and had to tell them about it. Not heard of Behcet disease so just looked it up, and it said it was little known and difficult to diagnose, so guessing you have been through the mill too.

Thanks for reminding me of what to do though and for your support.

 

[FeeBee]

Don't worry, I understand x

 

[Penelope]

Thinking of you.

 

[SAM55]

Now have an appointment with a housing association advice worker who does benefits, on Friday afternoon. Have managed to get under the bed (although my back hurts now) to find the files from previous assessments (and there are lots!). Nine boxes and they were in the last one! Not happy reading. Also managed to get some thoughts down on paper this morning but am mentally drained.

Managed hydrotherapy and a short walk. Need to, to work off the amount of protein bars and Options hot chocs I have consumed today! My top half is shrinking now despite the gain last week, which is encouraging, as I can now fit in an 18 top I bought about 6 weeks ago that fitted but didn't feel comfortable, and my lovely fluffy fleeces are starting to look like sacks, which they didn't last week. Can also fit into size 22 jeans.

 

[Nearly there-1]

Well done with your continuing weight and inches loss. You have a lot going on as well as this journey. I hope you get the assistance you need to help with your form filling.
Keep going we are all here to offer support and encouragement, you are part of a very strong and compassionate group of people. Very privilaged to be a part of this forum.
Stay strong and keep losing!!!

 

[FeeBee]

Yay for the good stuff and hugs for the other x

 

[Hannah2]

Sorry you are having a tough time of it @SAM55 . Really hope you get the help you need to sort it all out. Hope you do manage to get to Scotland it would be a shame to have to cancel that.

Good news on the clothes sizes! Dancing bunny time! YMCA!!!