Posted by wobblywife
Sorry to make this the 3rd post today but I wanted all the stuff I have to share in its relevant “box”, so had to split it up.
I am alive, sorry for having been quiet again but as you probably guessed there’s been a bit of a flareup. I’ve also had a million and one appointments and assessments. I’ve even been sent a form to fill out to get a form to fill out!
I think I told you recently I’d been referred to the pain management program. Well I met initially with a physiotherapist and was told I would be working with the team on a one on one basis for now as I’m apparently not ready for the group PMP. To me that’s a positive although my competitive side is wondering why lol.
Up to date, I have now seen the physiotherapist twice. Within these appointments we’ve discussed what I need out of this relationship and moved on now to pacing and my sleep issues, both of which are big issues to many of us with chronic pain.
The physio has talked me through the pacing concept in depth and this ties in with my GP’s decision to refer me for a wheelchair assessment (which I’ll go into further into the post).
For me personally, pacing is going to be difficult. The idea in the simplest terms is that when you push your boundaries in activities, it has a negative impact on what you can do the next day (or even longer). It is well accepted that regular activity helps pain, and yet when we continue on trying to be “normal”, we end up in a flareup, stuck in bed. So how do we change this? For me, I’ve been told I need to work out for any activity at which point pain interrupts my thoughts and take a step back from that to determine the safe level, whether that’s in distance of walking, time, etc. Then I can do a rest activity for a small amount of time, and start again. This in theory increases what I am able to carry out without laying me up and putting me back a step.
So for example, in my case pain interrupts my thoughts very quickly when I’m walking. Embarrassingly it’s about 2 minutes into a stroll! The physiotherapist explained to me that all activities in very basic terms fall into four boxes – walking, standing, sitting and lying. My rest activity can be any one of the other three. The plan for me is to use a wheelchair as a walker, walk for a lesser amount of time than it would take for pain to become an issue, then use the chair temporarily and start again. This should in theory make it a lot easier for me to have a day out rather than worrying about finding a public seat, and because I’m not hitting my breaking point, I should be able to gradually increase my mobility without paying for it in days in bed. There was an emphasis put on doing this regardless of whether I was having a good or bad day. On good days I am going to be very frustrated and on bad days I will have to kick my arse into gear and get on with it. I’m ready to do it…..well mentally I am. The wheelchair is absolutely imperative for me, and this is where the problem lies.
My GP referred me for a wheelchair assessment through adult services (part of Social Services). I was told they would come out to my house the following Monday but in reality they turned up on the Friday before and I wasn’t in. Not a problem, they had my mobile number and rang me to sort it out. At this point I was quite surprised as I had been told this would be an in depth evaluation in and around my home of my mobility needs. Instead the lady asked me a couple of basic questions on the phone, then told me I’d hear from them when I would be getting a wheelchair. At this point she told me that the waiting list was well over 20 weeks. Well, when you’re getting something for nothing you shouldn’t complain but I was really disappointed to be honest as I was dying to get going with my life instead of being stuck within a five minute walking radius of my house.
I am told by my physiotherapist that I can hire a wheelchair through the Red Cross, which is absolutely great. I’m lucky in that there is a centre just up the road from me, so my sister and I went along to ask for more information. They will lend me a wheelchair should they have one in stock, but it can only be for 6 weeks. So it looks like I will have to buy one well before I get a chance to have an NHS one, which is worrying me due to the cost of them.
The Red Cross also explained to me that most of their wheelchairs aren’t returned by their clients, which in hindsight is understandable but not acceptable. I suppose people are desperately in need in this area due to the long waiting list through the NHS/Social Services. However, it is very sad in this day and age that people are essentially stealing from a charity. Perhaps there’s something to be done there, a bit of publicity for the Red Cross and over the ridiculous waiting time for NHS help.
Moving on to the big appointment that I was dreading – my meeting with the spinal cord stimulator (SCS) surgeon. The usual process for a consultation with him is for the pain clinic to refer you after all else has failed. My neurosurgeon had written to my pain clinic recommending they refer me to him, but my pain consultant had refused, saying they never work and wouldn’t be suitable for me. My GP had then suggested he refer me directly as he (and I) felt that the pain consultant had been hasty in saying no and was biased. So I went along to this appointment knowing that I would be seen as the difficult patient who had gone over a consultant’s head, and this made me very nervous. At this point I fully expected it to be a “No”, but I wanted to hear objective information and also be heard. My pain consultant’s decision had been based on the idea of it not ENTIRELY fixing ALL my problems, and that’s not an expectation I ever had. I just wanted to explore it and talk about it.
So, last week I went along. I went in ready to be told that it wasn’t suitable for back pain, it wouldn’t take away everything and that I wasn’t suitable for a trial. I explained that I didn’t have those expectations and was a bit gobsmacked by the response.
The surgeon asked me what my main problem was. I explained I have three types and areas of pain – the back pain, the nerve issues in my thighs and groin, and my sciatica. I explained that out of all of them the sciatica has the greatest impact on my mobility, which is more important to me than my pain. At this point he stepped in to explain he has “new technology available” that may be able to target my back pain as well as the sciatica. In contrast to what my pain consultant saying about the SCS only being able to target a small and localised amount of pain in one limb, the SCS surgeon also explained that in many cases they actually struggle to get the stimulation into just one limb, so he feels that he could even target my burning thighs a bit. So I went in with no expectations and came out with a bit of hope.
I’m not saying SCS is definitely for me, but at this point I feel a trial would be extremely worthwhile. The surgeon says I am an ideal candidate, but that I have to lose weight and be “in the right place” physically and mentally for the trial.
Ordinarily the process would be to finish the group pain management program before getting a trial, but I explained that the physio had decided to keep me on one-on-one for the foreseeable future, and that this would mean I wouldn’t be starting the group PMP until potentially next May. So, for me, they are going to liaise with my PMP physio and let her judgement help decide when I’m ready, rather than me having to wait for the group PMP. I am really pleased and grateful that they were flexible in this.
As a final note, I wonder how many of you have had to apply for a disabled bus pass? In the past in this area, you would take along your DLA entitlement to their customer services office and that would be your proof. Now it is different – I visited their customer services and was told I would have to ring Social Services for (yet another) assessment. I did so and was asked some questions on the phone and told they will be posting me out an application form. I asked if that was it and they said that form goes back to them and then the transport company send me a form. So I have to fill out an application for an application form?! Madness!
Chin up lovelies, speak soon xx